Urging Others with UC to Test for Food Allergies

Meet the Mom behind the Story:

I am the mother of a 13 year old who was diagnosed with Severe Ulcerative Pancolitis in July 2012. My husband also has mild colitis which is controlled completely through controlling stress, diet and yoga.

Colitis and Testing for Food Allergies

My 13 year old daughter was diagnosed with severe ulcerative pancolitis in July of 2012. Her GI did not recommend testing her for food allergies but because of my husband’s experience of controlling his colitis through diet, we had her tested anyway – the test for 90 potential allergens. The results showed she was allergic to soy, eggs, almonds, green peas, milk and cinnamon. Now, needless to say, there is no way we could have ever figured all this out for ourselves because we never just eat one food at a time!

So, after we eliminated all that, she was going great on Lialda, VSL #3 and supplements like turmeric, fish oil, etc. Then suddenly…the cramps, the diarrhea, no blood or mucus yet, but we knew what was coming. We started trying to figure out whether she could have gotten any of the allergens. Sure enough, the 100% juice blend I’d given her the morning it started — had soy lecithin. Don’t bother to give me the “Bad Mother Award” for not checking before, I’ve already given it to myself many times over!

This is the first reason I wanted to share the story. If we didn’t know about the soy, it would feel like this just came out of the blue and we would feel and be so much more helpless. So far, every time she’s gone in the wrong direction, it’s been because she consumed one of the foods that is toxic to her body specifically. I know people say “pay attention” and you can figure it out. To me, knowing for sure is so much better! I cannot imagine trying to make food choices for her every day without knowing. It’s hard enough when you do!

Some ASA Medications Have Common Allergens

The second reason I wanted to share our story is also important…some of the ASA 5 medications have common allergens in them and pharmaceutical companies are not required to disclose this information the way food products are. Legally, packaged foods sold in the US are required to have labels with clear words (they can’t call soy “miso” and things like that) if they contain any of the top food allergens. Medications have no such requirement for inactive ingredients. We had to change her ASA 5 medication because she was on one that contained either corn or soy and the company would not disclose which (they said they didn’t know for sure – which is strange because even candy manufacturers are required to disclose!) Since corn and soy are two of the most common food allergens in the US, this truly surprised me and is one of the reasons I wanted to share our story. We are now convinced it was soy because she did not truly start to heal until we changed the ASA 5 medication to one that is confirmed not to contain soy.

I would hope that everyone who was struggling with ulcerative colitis would know whether they have food allergies and very specifically what those allergies are. The results even give you a rating of just how sensitive your body is to specific foods. It may not be the end all/be all answer for everyone but it is a piece of information that just might be critical. Warm wishes and gentle hope for all of you. Thank you for being part of our support community and thank you Adam, for giving us a place to gather.

written by “Mother and Wife of UC’ers”

submitted in the Friends and Family of UC’ers Venting Section




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39 Responses to Urging Others with UC to Test for Food Allergies

  1. UC Family Boy
    uc family boy February 1, 2013 at 3:19 am #

    Great Post, food allergies come about due to an imbalance of the TH1 and TH2 balance. Some talk about leaky gut being apart of the problem…undisgested food find their way to your bloodstream and is attacked as it is seen as an invader, so everytime this item is eating we get the same response!!!!
    How beautiful the body works. More to the point, how simple it is to find the root, pluck it out and healing can continue.

    Im glad your daughter is responsing to all the hard research you guys have done. Also I am glad your partner is doing well, does he follow a certain diet? (SCD,GAPS…)

    • Mom & Wife of UCers February 3, 2013 at 7:39 am #

      My husband is a fish-eating vegan. (pescatarian!) who eats whole, unprocessed food 98% of the time. He does not follow the specific carbohydrate diet on a strict basis because he doesn’t eat any dairy products (he’s allergic) and does eat some rice every once in awhile among other things(I think that diet says no to rice but I’m not sure). We think that one makes a lot of sense though. He also does yoga for 1.5 hours 4-5 days a week and consciously avoids highly stressful situations as much as possible. All this started four years ago after two years of his being on and off in a flare almost constantly. It was taking over his life and we started researching and testing. We do believe in leaky gut.

      Thank you for your note. Are you on a specific diet?

      • Peter February 6, 2013 at 1:20 pm #

        Brilliant! “fish eating vegan”
        Like saying “whiskey drinking teetotaller”
        Made my day

  2. Kara February 1, 2013 at 3:15 pm #

    My 13 year old daughter was diagnosed in March 2012 and my husband has battled with this since he was 19. His has never been fully under control. we have been considering getting tested for allergies but reallly thought this could be controlled easily with meds. Her first flare responded immediately to prednisone (50 mg)(and prayer) and she didnt have another symptom for 6 weeks. (maintance med Aesocol hurt her belly and we settled on Sulfasalazine). weined off of pred. and felt great. didnt take our meds regularly because we were still in denial and there were no symptoms. The next flare was in July when she caught a stomach bug. we thought she recovered completely but in September she was hospitalized and blood work showed that her cells were very small (perhaps she had not recovered fully from July flare?). Then we started Prednisone again (40mg) and added Immuran 100mg. It took several days to stop bleeding this time and within a week or two we were fully without symptoms. LIfe seemed good. In december of 2012 we got more blood work and revealed that her Hemoglobin was a 12.5 (the best ever). she was having one normal, big bowel movement per day. Then just a week after that she came down with a stomach bug. She was very nauseous, and her tummy hurt. My 5 year old came down with the flu the same day, so I thought it must be the same, but Maddi didnt have any upper respiratory symptoms or fever and three days later the D and blood and nausea were in full force. WE did a stool culture and found she tested positive for Rotavirus. We have no idea how she picked that up as no one in our house had it. We tried to avoid the hospital as it was a few hours away and Christmas was approaching. I called the Pediatrician (who is local) and she told us to go straight to the children’s hospital (3 hours away) but I called the specialist and we thought we would try getting fluids at our local ER first. We did. by the next night the cramps were even worse and she wasnt even holding down broth. so to the big hospital we went and then after three days and starting Prednisone again, we went home. Three days later it was worse. Called Specialist. He doubled the Prednisone to 60 mg. and three days after that, still no response, so he added a strong antibiotic (Flagil) . That stuff is rough. After 14 days we could take no more. We had two good days off of the antibiotic and got permission to wein down from the prednisone, believing that the past two weeks of symptoms were caused mostly from the antibiotic which is known to be tough on your stomach and gut….. Just a day or two later the symptoms returned. Cramps, blood, more BMs. The blood is still minimal but present in each stool. So now here we are Feb. 1st and have never recovered from the flare that began before Christmas. Did more blood work yesterday, because she is getting pale. (She is such a good trooper and really doesnt like to complain so I have to pay close attention to her symptoms.) She is still doing a few activities a week (horseback riding and Cello lessons and homeschool most days that she feels well enough for a few hours)….but I have noticed that her energy level is getting lower. Her Hemoglobin was an 8 so we called the specialist today and he wants us to come in (3 hour drive) and discuss “biologics” which means Humira or Remicaid. We really want to be sure that we have tried everything we can with diet before we go to that step. Some people have had great results on these meds but many have not and my husband has avoided them for years. We are going to post pone our visit to the specialist to go see a D.O. who believes in trying to heal things with diet by finding your allergies. I have heard great things about her but havent given it a try yet. My mom has been helping us do some research and I am so glad that she came across this site a few days ago. I could just cry in thankfulness that people take the time to tell their stories and what has worked and not worked for them. We know no one with these conditions except my husband and a dear family friend who is also struggling. we have tried bland diet, days of liquids only to flush things out , etc….

    if anyone has advice or ideas please email me. Her BM’s are a little bit formed and only a minimal amount of blood which is much better than December but we are not fully recovering…. :o( kara.copes@gmail.com

    • Mom & Wife of UCers February 3, 2013 at 7:20 am #

      Dear Kara,
      Thank you for your note and sharing your story. It’s just awful and so similar to our experience.

      Here’s some more information:

      The type of testing you get is critical. The Metametrix website has lots of helpful information. That’s where we got ours. No disclosure needed, as I have nothing to do with this company! We got the Allergix IgG4 Food Antibodies 90, the celiac profile and the GI effects. You place your order and they send you a kit. It was very expensive but some insurances pay for it and they do have payment plans. If it turns out she has food allergies, they send you a diet that addresses the specific problems. Now is a good time because she’s off prednisone, right? Hopefully the DO can help you with all this.

      Another option or possibly just to try to get some relief is to go on an “elimination diet” in which you eliminate the 8 or 12 most common allergies and see if you get some relief. Look up “elimination diet” and try not to get scared! It means change, but it’s very doable – think unprocessed food – meat, vegitables and fruit. While you’re at it, look up “gut healing bone broth” and pull out your slow cooker! Both my husband and daughter drink a half a tea cup in the evening.

      All the things she was allergic to were things that had been her favorite foods growing up, and people with food allergies tend to get allergic to the stuff they eat day after day. We also eliminated gluten & dairy even though she was not allergic, because our functional medicine doctor who we trust a lot says that dairy and gluten never helped anyone with UC.

      Your doc has probably told you that she was more succeptible to the Rotavirus because the prednisone had her immune system compromised. That was one of the big motivations for keeping our daughter off pred as long a possible. It was very hard to try other things because pred works so fast and reliably. You may not be able to get the bleeding stopped with diet alone, but see if steriod (cortizone) enemas can get it stopped so she doesn’t have to shut down her immune system to get the steriods to the area where they’re needed. Everyone is so different and the origins and triggers of the disease are so different, we have to keep trying new options.

      Lastly, hang in there. Maddie sounds like a vey strong young woman. You are doing all the right things and this is just an incredibly challenging situation. I asked our doc if she could talk to you or your DO and she said she would. She is very caring and has done a ton of research to help us. We are in Austin, Texas.

      Thank you for writing and please let us know how things go!

      With kind regards,

      Wife & Mom

      • kara March 11, 2013 at 12:17 am #

        Dear Mom and Wife of UCers,

        I just read your comment from Feb. 3rd. Yes, i would really like it if my D.O could talk to your doctor. Our D.O. is the nurse practioner D.O. and was very helpful and would be willing to talk and learn what she could about this specific disease. Her is my email if you could share her name and contact information. We are supposed to go back soon. I feel a little torn because we have apointments at the end of March with both our GI and the D.O. and we are not following all of the advice of our GI and he will probably be irriated with us. but the bottom line is, what we are doing is working better for us now than all of his concoctions put together that did not bring relief. I sent him an email with a few links of the things we were doing that I told him about at our last apointment….I have not gotten a reply, but I am sure that he looked it over and put it in our file to discuss at our next visit. after all, he did have the thank you letter that we sent after our original diagnosis and hospital stay that I sent him in the mail and he has taken an interest in Maddi on a personal level. He explained things so well to her and emphased the importance of her monitoring her symptoms and not just leaving it to mom. He encourages her to do the talking when he asks her questions, and he made her a CD of his favorite Cello music when he first learned that she played the Cello. he also gave me his personal pager number when I complained that his nurse was rude on the phone. I dont want to write him off completely, I like him, but I need to do what I feel is the best for my daughter.
        I am against his recomendation on the following:
        1. His office called to tell me to increase our immuran from 100 to 150mg daily. I said, “thank you” but I did not.
        2. we have taken her off of the sulfasalazine now that we are on a natrual form of anti-inflamatory and finally the headaches stopped completely

        Do you have any suggestions on where to go from here?

        Kara

    • Mom & Wife of UCers February 3, 2013 at 7:44 am #

      Probiotics: My daughter is also on VSL #3 (2x daily) which you can buy in a pharmacy here. My husband on a probiotic made by PURE and Kombacha probiotic tea daily.

    • PAULA March 10, 2013 at 6:49 pm #

      Dear Kara,
      Your story sounds almost exactly as my son’s story. In and out of the hospital constantly-would get better then another bug. Started getting pale, low energy etc. He went in at an 8 HB for a blood transfusion on Fe. 10, 2013, he passed away on Feb. 12, 2013 because they infused too much liquid in him, kidney failure, heart failure. All the meds, including Flagyl were also given to him. Please, PLEASE see another Dr., this can kill her!!!! It’s as if I am reading my son’s story.
      Don’t delay!!! I did sooooo much research, endless hours, and I wouldn’t sleep for days trying to find alternative treatments. GOD BLESSS YOU and I hope that you find a treatment that works.

      • Mom & Wife of UCers March 10, 2013 at 10:16 pm #

        Dear Paula,

        I am so very sorry for the unbearable loss you have experienced. It is incredible that you are so giving to reach out to kara and the rest of us in this way. what a wonderful, giving heart you have.

        Kara’s daughter, Maddie, is doing much better now as of her last several posts – they are further down. Thank you so much for sharing your story with us. I will never forget what you have said. You and your family are in my prayers tonight.

      • kara March 11, 2013 at 12:05 am #

        Dear Paula,

        I am so sorry for your great loss…there just are no words…Thank you for sharing a bit of your story. I would like to know what I could learn from your story so that we dont allow doctors to make any similar mistakes. I know that there are no magic words, but I will be praying for you and your family, that God will give you comfort in knowing that your son is safe and no longer experiencing any pain… I will go back and read your original story if I can find it……..

        I never even knew that a blood transfusion could cause such a complication. I have been a little fearful of allowing Maddi to have a transfusion of someone else’s blood. but that was just because it felt like there could be a possibility of her receiving a disease or something, I never knew it could lead to such a terrible complication as what happened to your son!

        Back in March of 2012 I called red cross and had them fax over a direct donor sheet so that the doctor could sign it. It was free for me to then goto red cross and give blood myself as a direct donor. (if I remember that correctly) I was surprised at this process being so simple. When she got diagnosed as being anemic by our pediatrician she had a H5.1 but it was 10 days later or so when we got our apointment to the Hemotologist and by then she had been on three iron pills a day and was now a H 6.6 . At that point we were hospitalized for the first time after discovering the source of blood loss, but even at such a low number our GI doctor did not feel it was necessary for a blood transfusion since her numbers were on the rise.

        I have done some research on diet and methods that have worked or not worked for others, but I really dont know what else to do as far as research. Everywhere I look (mayo clinic website and others) the order of meds given for UC are the same and in my mind I see them as
        Level 1: anti-inflamatories like Sulfasalazine and Meselomines like Aesocol
        Level 2: drugs that suppress your immune system
        Level 3 which is Humera and Remicaid type drugs.
        Variations: Of course there are several similar type meds on each level and sometimes you have to go from one to antoher to find what words and then there are Steriods like Prednisone that is the rescue drug to help with an acute flare. And the list seems to be the same on every site at every research hospital.

        And then there is the Natural doctors who recommend finding the true source of inflamation using diet and vitamins and suppliments and natural therapy, but the D.O. (health doctor) that we have found does not take the place of your specialist and if you need hospitalization then you are back at the mercy of the GI who is in charge during a hospitalization. and the GI, of course, does not agree with anything that the D.O. has receommended because he says, “there is no science behind any of it, but if you want to go chase that rabbit and it makes you feel better than Im all for you feeling like your doing something.”

        The part that I have not shared with you all is that my husband and I are houseparents at a chidlren’s home and have been for the past 7 years. I love being a parent to my 3 biological girls and then my 8 Palmer girls, but you can imagine that it can be challenging to make time for everything.

        I feel that it is my job with Maddi to:
        *help her to stay positive and in the right frame of mind for eating healthy and taking meds
        *ensure that she takes her meds 4 times a day (B, L, D, Bedtime)
        *ensure that we have enough food that she can eat in the house when our family is eating other things ( i cannot afford speciality food for 13 when normal food is already provided) nor would I have to emotional capactiy to inspire them all to leave junk food behind forever.
        * and monitor her symptoms (She and I share a bathroom that is connected by our two bedrooms- thankfully. this makes it a little easier)

        but in a busy household of 13 there is laundry and housework, and keeping us all on schedule. not to mention homework, science fair, doctors and dentist and pharmacies and med sheets to keep up with too.

        So I am so thankful for all of the advice and stories that I can glean from on this chat. My sister in Law is a nurse- soon to be a Nurse Practitioner, and just did a big research project on UC. She was able to access Medical data bases on any medical research being done. this is a data base that is normally only available to doctors. I am excited about reading this and seeing what we can learn from it.

        Is there a such thing as a GI specialist who also studies natural alternatives like Dr. Oz does. I really enjoyed his recent podcast about the topic of immune disorders (Chrones, U.C., Rheumatory Arthritis) and how diet and health measures can lead to remission.

        Thank you again Paula, and I hope that I can find more of your story.

        Kara

  3. bev February 1, 2013 at 4:06 pm #

    Great info!!!

    Thank you from all of us:)

  4. joanna February 5, 2013 at 1:16 pm #

    how much did this test cost? is it covered by your insurance?

    i called my insurance company last week and they only cover a skin prick allergy test which i doubt is the same thing as this.

    • Mom & Wife of UCers February 5, 2013 at 2:02 pm #

      It’s not the same thing. Some Blue Cross/Blue Shield policies cover the Metametrix testing, but mostly it’s just an out of pocket expense. I’m not sure how much that one is alone, but for the celiac panel, complete GI testing, and the 90 allergens, it was about a thousand dollars. Since we never eat out any more, I told myself we’re probably saving a hundred dollars a month on not eating at restaurants and it would be paid for within a year. they do have payment plans. Best to you.

      • joanna February 5, 2013 at 3:12 pm #

        thanks. yeah, my insurance won’t cover it but it seems like it’s worth it. did your daughter just have to do blood work for it and mail it to the lab? that would be the easiest thing for me to do.

  5. Mom & Wife of UCers February 5, 2013 at 5:21 pm #

    Yes, on the website you order the kit and once we got it, we went to a place that took the blood and they sent it in. I think it was CPL. Let us know how it goes!

  6. kara February 5, 2013 at 11:38 pm #

    My 14 year old daughter has been in a flare for 50 days that has not responded to steroids or antibiotics or anti inflamatories. 4 days ago we decided to try a gluten free diet for two weeks to see if it could help. After one day her stools per day went from 15+ to just two. The stools still looked the same but were less. She then had taco soup for dinner on day two and began vomittingbagain after a 24 hour break. She woke up the next morning and vomitted and pooped bloody stool (still looked th e same) for iver 20 minutes. Then 30 minutes later she was back in the bathroom for a repeat of all of that again. We started a food journal 7 days ago and now crossed cheese and canned items off our list. We learned something we called our pediatrician and begged to be tested for food allergies and for gluten (even though Ive heard of false positives and false negatives). Pediatrician said she would send the orders and we coukd go to hospital lab and be tested as soo as we wanted. So we did. Dr. Ordered a repeat of all labs that she had just done 4 days prior because she is nervous that we are still at home and not in the hospital. (Our specialist is 3 hours away, we I have his pager number and she faxes everything to him. He knows we are I this flare and she was hospitalized over Christmas.) So today pediatrician tels me again how concerned she is. Hemoglibin is 8.6 (down from 12.5 ) and white blood count is up to 25.6 , also CRP shows inflamation to be five times the normal level. We goto GI specialist in two days….when my daughter has flares she also has vomitting and is very naseous. Her diagnosis is ulcerative colitis. So we havent really got an explanation for the stomach but obviously there is inflamation there too.

    Well today she is still very tired and a little crampy but something amazing has happened. After onk y having one small bm this morning, she just passed three actual logs with no blood present. “Mom, come quick. I have real human poop!” Its 11:55 pm. We are both tears and praising God for this exciting victory. We have been believing to figure out this mystery and although its only been 4 days of gluten free it has made a big difference. We go see GI specialist on Thurs morning and D.O. Thurs afternoon. D.O. has already told us to start the Paleo diet. It sounds similar to the SCD. I will try to post again next week.

  7. Mom & Wife of UCers February 6, 2013 at 7:02 am #

    You’re still getting her specific allergies too, though, right? I believe the allergens are much more common among with children and adolescents with UC — because they’re much more common among children and adolescents in general. “real human poop” – I can’t wait to tell my girl about that one!! Humor is everything. she says when I’m monitoring her that I’m on “poop watch”!

  8. Kara February 11, 2013 at 7:01 am #

    update: Its been 9 days since we started the gluten free diet and we now have gone two days without any BM’s and today. normal logs. Last weeks “real human poop” was formed but was also black and tar like. (could be the iron). We had the black tar Bm’s for 3 days total. food allergies came back negative. We only tested for the most common foods, its not nearly as thorough as yours sounds. We are hoping to hear back on the gluten allergy test. it is the only one that took more than a couple of days to come back. Hoping to hear today. We also saw a D.O. who recommended the Paleo diet. We have cut out gluten and dairy but havent quite gone all the way to Paleo yet since what we are doing is working well.

  9. Mom & Wife of UCers February 13, 2013 at 8:22 pm #

    What great news Kara!! Thank you so much for taking the time to write. All is well here too!

  10. Kara February 14, 2013 at 7:01 am #

    Gluten Allergy tested negative, but Dr. OZ says that that test only covers one strand of Gluten and if your body tells you that its better off without Gluten than listen to that. so, we will go with that.

    Kara :o)

  11. Mom & Wife of UCers February 14, 2013 at 9:48 am #

    Gluten sensitivity tests are difficult to interpret for a whole bunch of reasons, including gluten interacting with other foods. I couldn’t agree more to “stick with” what you’re doing. When you have a chance, look up “the boy with a thorn in his joints” – it’s a new york times article you will find very interesting I think.

    The testing we got also worked differently than a “normal blood test” but I am not capable of explaining how except to say it measured something about the autoimmune response and not just allergic reactions.

    Thank you again for the update. Keep in touch. It helps a lot.

  12. kara February 21, 2013 at 7:35 pm #

    My 14 year old daughter is still doing much better. After a 55 day flare with blood we began the “Paleo diet” with a little gluten free carbs added and have been doing well. I was so surprised yesterday that her hemoglobin has not gone up like it always yas before once she stopped bleeding. We are still taking iron but after speaking with my sister (nurse) we are going to go get a $15 B12 shot. She says that once youve been anemic for a while yiu can have such an imbalance in the gut that you need more b vitamins I adition to the iron to produce more red blood cells.

  13. Mom & Wife of UCers February 25, 2013 at 7:10 am #

    Colitis effects the body’s ability to process and use nutrients. It’s really good you are keeping track of it and you may want to find out if there are any ongoing supplements that she needs because she’s probably got some making up to do!!

    So so happy things are still manageable for you. All is well here too – and sticking to a diet is truly not a problem after all we’ve been through!!

    • Kara February 26, 2013 at 10:31 pm #

      Today we got back test results and they show that there is 0.0 inflammation in her body! This is big news. Maddi still feels great and has no U.C. symptoms. She does not have her full energy back yet but I know that’s because her Hemoglobin is still a little low from losing blood previously. And her platelets were off but I have no idea what that means. We will continue the supplements and check her blood again in a few weeks. I really like our new blender called a blend tec. It’s like a vitamix I have been told. We can put in one banana, orange, and apple, ice cubes and a little orange juice and it comes out a great healthy smoothy nice and thick, without wasting the pulp like the juicer. We have added this once a day whether we feel like it or not. Great vitamin boost. Next step: we Need to add our whey protein which she doesn’t like to the smoothy.

  14. rjw February 26, 2013 at 11:11 pm #

    Kara,
    Glad to hear it. What inflammation tests did you have done? SED Rate? Non-Cardio CRP? Thanks. Have you looked into FMT? Also have you guys tried the EVOO?

  15. Kara February 27, 2013 at 10:17 pm #

    The two tests that the pediatrician did to check for inflammation were SED rate and CRP.

  16. Nicole March 2, 2013 at 7:17 pm #

    Hello, I am 31 and was diagnosed with indeterminate ulcerative Colitis/Chrones…. I was diagnosed a little over 3 years ago after surgery and 5 days in the hospital. I have done many medications and A LOT of prednisone. About 5 years ago I had luch and then went to run at my gym, not even a half a mile in I suffored what I now know as an anaphalxis. This seemed to be the start of the nightmare I now live…. The reaction was to the food and then exercise. I went to see an allergist and they did a prick test, discovering intolerances to milk,eggs, rhy wheat, soy,potatoes,tomato’s,chocolate, nuts, and beans. I recieve allergy shots that helped for a few years, but not that I am on Humira and several other medications I am struggling with food, and my colitis/chrones big time. I feel like the Humira has broken my immune system down so much that my food allergies are much worse. I am not able to eat anything without a reaction; coughing, swollen throat, swelling of gums and painful blisters on roof of my mouth. I am having “normal” colitis bm reactions as well. But wait…… now I also have cdiff!! I am being treated for cdiff for the 4th time in 8 mo. I have no clue as to pin pointing anything anymore. It all hurts and all makes one thing or another very misreable. My GI says do not change diet, my allergist says if it bothers you do not eat it…. uggg no one has any specifics for me. Did that test for your daughter give specifics? Was it a stool test or blood work? I am headed to KU Med for a second opnion and I want to have the names of as many testing ideas as possible. I hope your daughter is feeling better… this is something a child should NEVER have to experience. : (

    • Angela March 2, 2013 at 8:03 pm #

      Hi Nicole,

      I am so sorry to hear about all the problems you’ve been having! I recently became aware of Prometheus labs for tests from my doctor and I think you should ask your new doc about their IBD panel. It’s supposed to be the most accurate blood test out there to diagnosis UC and specifically what type of UC so that doctors can treat it better, especially since you have indeterminate UC.

      http://www.prometheuspatients.com/PDF/Prior_Authorization/IBD_sgi_preauth.pdf

      I’d listen to your allergist about the diet since that isn’t a GI’s specialty and maybe see a nutritionist as well, they might be able to help. KU has a great gastro department so hopefully you’ll be in good hands!

      You’ll get through this! I’m 24 and was diagnosed 11 years ago. My docs and I didn’t have everything worked out until 3-4 years into it (I was on prednisone straight for the first 3). It does take sometime. Question, are the mouth blisters and swelling of gums more common on a flare or are they right after eating foods. Mouth sores are very common for UC’ers on flares. They’re actually my warning signs that I’m starting a flare. Also, have you had your Vit. C levels checked? If you’re low there could be a correlation there.

      I hope everything works out for you! Good luck!

      • rjw March 2, 2013 at 10:35 pm #

        Hi Angela,

        I had the IBD Panel done at the local hospital where they draw blood and send it to the Mayo Clinic labs. I have heard about the lab you mentioned before. I was wondering if they check for the same thing?
        My IBD Panel has 3 categories:
        1) Saccharomyces cerevisiae Ab, IgA apparently if you are under 20 you are negative;
        2) Saccharomyces cerevisiae Ab, IgG again under 20 is negative and;
        3) Neutrophil Specific Antibodies and that is either negative or positive.

        Do those three match what your company tests for on the IBD panel? Please let me know. Thanks.
        Also there is a paragraph from the Mayo Clinic stating on the report that negative results should not be relied upon exclusively to establish a diagnosis of IBD. Approx 50% of individuals with indeterminate colitis are negative for the three IgA, IgG and S. cerevisiae and neutrophil-specific antibodies. They go on with more bla bla you need a correlation of symptoms, endoscopy and biopsy etc.

        • Angela March 3, 2013 at 7:24 am #

          Hi RJW,

          From the lab sheet it looks like they do all three of the ones you listed but they also test C-Reac Prot. and all these:

          1. pANCA (anti-human neutrophil ctoplasmic antibody)
          2. Anti-OmpC
          3. Anti-flagellon(Cbir1)
          4. Anti-A4-Flag2 IgG
          5. Anti-FlaX IgG
          6. ICAM-1
          7. VCAM-1
          8. DNA sequencing (ATG16L1 SNP, ECM1 SNP, NKX2-3 SNP, STAT3 SNP)
          9. Nucleic Acid Probe
          10. Lysis of Cells

          So the test is much more in-depth than the Mayo Clinic panel. That seems right that people with Indeterminate colitis can be negative for some of those immunoglobulins as if there were clear indicators they wouldn’t be indeterminate. But I think this test will help you out as it checks both UC and Crohns indicators (numbers 3-5 I believe) as well as a DNA sequencing. For some of us there’s actually a flaw in our genetic code that makes us more susceptible to having developed the disease. I’d definitely recommend you ask your doctor to to run this panel instead. It can’t hurt right? and they check a lot more than can be shown by either biopsy or basic blood work. pANCA is the big that they’re checking, all the new research of IBD diagnosis is showing that antibody as being a key player yet its not in main stream blood work yet.

          • rjw March 3, 2013 at 10:06 am #

            As always thank you again for that great information.
            This really sucks. Here I am figuring that I had the whole IBD panel from my doctor and there are a whole list of tests yet that could have been done. If I had not of asked you I might have never known the difference…
            I am going to research all of those tests and add it to the stool test you mentioned last week FECAL LACTOFERRIN TESTING. Again, I wish there was somewhere to go where they had at least all the different possible tests clearly listed for the layman rather than his maze of different approaches that seems to occur with different doctors and different experience levels. At list of test that you could say to your doctor well what about this and what about that. It is like am I missing something, some sort of handout that others have gotten but for some reason I did not. Of course, I know that others have just had more experience and websites like this are just amazing. If you ever come across any other test please let me know. I am in this period in my mind of trying to understand did I do something/did something happen or does not matter the IBD is on its own clock and has all happened according to my internal plan.
            Anyway my first approach is adding all your tests and trying to figuring out clearly what tests can also check for bacterial imbalance. Again thank you for the detailed information.

          • Angela March 3, 2013 at 2:31 pm #

            You’re welcome! I’m glad to help! That has to be incredibly frustrating. And doctors/hospitals are supposed to make you better not stress you out more! I’m not sure what hospital you’re at but maybe find a new one? Look into research hospitals in your area (usually the university hospitals) or one that has a specific IBD center within their GI department. Also, make sure your doctor has a clinical interest or focus in IBD (even better if you can find one that publishes! Means they’re constantly researching). You can usually find that under their bio.

            I think a lot of us researched all of this on our own but wouldn’t it be great if we took our collective knowledge and made a pamphlet for new UC’ers? When I was first diagnosed sites like this didn’t exist but I had a really great pediatric GI (he was the head of their IBD center) who used to go to the hospital library and copy articles for me and then quiz me about them at out next appointment. He was a wonderful doc who unfortunately passed away unexpectedly from cancer about 4 years after my diagnosis. Hopefully, you’ll find a doctor like that soon! They’re out there, I was luck to get one similar now that I’m at an adult GI (he’s actually starting up the hospitals first IBD center).

            Feel free to ask about anything if you have more questions! I’ll gladly help research things. I’ll also keep an eye out for any new tests.

          • rjw March 4, 2013 at 9:53 am #

            Oh Angela,

            I am calling them today to find out how much. Did your insurance cover it?

          • rjw March 4, 2013 at 10:53 am #

            I called Prometheus for their IBD sgi series of tests. $690 and they do not take several major insurance companies. You can get a 35% discount if you want to do a self pay rather than submitting your insurance. “They stress this” you and your doctors office do not submit insurance information because if they do it is to late no 35% discount regardless if they take your insurance or not. Anyway I am going to talk with doc about doing anyway. I also talked to Mayo Labs and they only offer the three I mentioned for IBD. They do not do the rest (at least as part of IBD testing of-course everyone does CRP and maybe others on their own and for other reasons). Thanks again.

          • Angela March 4, 2013 at 12:16 pm #

            That in the broad scope of things actually seems reasonably priced for all they test. I never had their IBD sig but I had their Anser IFX (remicade antibody panel) which runs about $2,000. Glad you’re still considering it though as in the long term it could potentially really help you out. Was your insurance one of the one’s not accepted? If it wasn’t one of those, try giving your insurance a call and they should have an idea of what they’d cover before you submit a request to Prometheus to help you decide what the cheaper route would be.

  17. Mom & Wife of UCers March 3, 2013 at 8:30 am #

    Dear Nicole,

    I’m so sorry to hear your story. It sounds so physically and emotionally painful I just can’t imagine what you have been going through! The c-diff is triggered by anti-biotics, right?

    We have always heard “diet doesn’t matter” from my husband’s and daughter’s gi’s. But Angela’s right, they are not trained in these areas and genuinely do not know unless they’ve gone out and sought the information from some source other than medical school.

    here’s the link to the testing:

    http://www.metametrix.com/test-menu/profiles/immune-function/allergix-igg4-food-antibodies-90

    The page I’m sending you to explains what they’re testing for and why. We also did their celiac profile. We are using a “rotation diet” to prevent additional allergies from developing. This website has good resources for figuring that out (no disclosure needed, I have no ties to the company). Her celiac testing all came out negative but upon our doctor’s recommendation, we gave it up anyway based on other research which I believe basically says gluten doesn’t really help anyone with UC so why take a chance. She says the same about dairy and carrageenan.

    Our path has been guided by an MD who is certified in “Functional Medicine” which focuses on getting to the “why” of disease instead of simply treating symptoms as they arise. (You’d think they’d all be trained like that, wouldn’t you?) If you are ever looking for one, go to the functional medicine website and put in your zip code to find one in your area.

    Keep us up to date with what you learn. We’re here and we know just how hard a bad day can be.

    Wishing you gentle days,

    Wife & Mom

  18. jeremiah johnson March 23, 2015 at 12:24 pm #

    i was thinking about getting these food allergy tests but im just not sure how to go about it…i called the metametrix website and they told me i cant just order the test myself that i must have it done through a clinician????? so do i just ask my primary care doctor to order this kit for me?

    • Wife & Mom of UCer's March 24, 2015 at 7:18 am #

      Hi Jeremiah, Some primary care physicians or GI’s will order the testing, many will not. Our GI says things like “that’s very controversial” and does not agree that food allergies make a difference. In the mean time, here we are two years later and neither my husband nor my daughter have shown colitis symptoms in a very long time! (by the way, we also had to go completely organic before everything got resolved).

      So – you should be able to find a “functional medicine” doctor in your area. There’s a functional medicine website where you can look them up. functional medicine just means finding the root cause of chronic disease instead of just treating symptoms. If you have trouble, a lot of them do skype consultations, so you may be able to do it that way too. You will probably have to pay out of pocket instead of counting on insurance. We spent a bunch of money the first year but now mainly just spend on supplements and VSL #3 with a doctor’s visit jut once a year.

      There’s a project called the “evolution of medicine summit” and they give educational programs online to explain what is happening to the human microbiome and immune systems. Please just don’t let anyone tell you that food doesn’t matter!!

      Please let me know if you need any other information or support.

      With kind regards,

      Wife & Mom

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