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Esonophilic Colitis And Celiac?

lamood

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lamood Newbie
lamood
Posted

Hello all, I am new to this site. My daughter has struggled with intestinal trouble since birth, bad colic, put on soy milk and special bottles but still very bad tummy troubles. She has had on again off again problems with stools, bloody, mucos, daily pain. She is now three and diagnosed with eosinophilic colitis by a colonoscopy and biopsy results. Prior to that she had C-dif colitis too. She has had a blood test for celiac and was positive EGg, negative on the genetic test. Could celiac still be a possibility. She is seeing an alergist this week. They want to start her on gastrocon and Levsin. Sinde eosinophilic colitis is an allergic reaction, I thought it could still be a possibility that it is Celiac. She also has an ultrasound tomorrow to see if any other organs are involved.

Any one have any experience with this.

Thanks for any information

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pixiegirl Enthusiast
pixiegirl
Posted

Hi I just wanted to say that your daughter isn't alone... I was first diagnosed with Celiac about a year and 3 months ago. I did improve by not eating gluten but I never got all better. About 6 weeks ago I was positively diagnoses with EC by biopsy. I'm really struggling at this time because after allergy testing there is hardly any food I'm not allergic too.

I just started doing a rotation diet to see if I react to the foods I tested allergic too and its not easy, there is virtually nothing I can eat. I just started on gastrocrom yesterday and have heard it often helps but its way to early for me to tell yet.

There is some speculation that my untreated Celiac (for about 11 years) caused the EC.

I'm here if you need to talk!

Susan

lamood Newbie
lamood
Posted
  • Author

Thanks so much for the response. She has an appointment with an allergist tomorrow, so hopefully we can get an idea soon as to what she is allergic too.

Is it always a food allergy with eosinophilic colitis?

Hi I just wanted to say that your daughter isn't alone... I was first diagnosed with Celiac about a year and 3 months ago. I did improve by not eating gluten but I never got all better. About 6 weeks ago I was positively diagnoses with EC by biopsy. I'm really struggling at this time because after allergy testing there is hardly any food I'm not allergic too.

I just started doing a rotation diet to see if I react to the foods I tested allergic too and its not easy, there is virtually nothing I can eat. I just started on gastrocrom yesterday and have heard it often helps but its way to early for me to tell yet.

There is some speculation that my untreated Celiac (for about 11 years) caused the EC.

I'm here if you need to talk!

Susan

pixiegirl Enthusiast
pixiegirl
Posted

No its not, it could be inhaled allergies as well, pollen, mold, dog dander. I'm being tested for those right now I came back with a lot of positives with the food allergy tests however all of the doctors at the "allergy" office say the same thing... allergy testing for food is sort of hocus pocus... You get a lot of false results so the allergy testing is only going to give you an idea of where to start. Right now I'm trying to do a rotation diet, where once you eat a food (say chicken) you can't have it again for 4 days. That goes for everything, every sort of food, potatoes, then not again for 4 days. You record how you feel, mentally, physically, etc and try and figure out which foods you react too. I started taking gastrocrom just 2 days ago and it seems to be helping a bit already. From what I understand it is a drug with very low side effects unlike many of the other drugs given for this disease (steroids). so you might want to ask about it. Its actually fairly rare and its hard to get good information and find a doctor that has any experience with it.

Susan

lamood Newbie
lamood
Posted
  • Author

My daughter is starting gastrocrom too. I am waiting to start it until after her allergy tests Monday. They said not to take any allergy meds 3 days prior to the appointment. That is good that you gon't have any unusually side effects from it. I hate reading the possible side effects on the medicines, because it just gives me more to worry about.

It is hard to find anyone with information on the disease. Her primary care doctor really felt uncomfortable with the topic because they don't deal with it. So, we are really relying on her pediactric GI.

pixiegirl Enthusiast
pixiegirl
Posted

Well lets keep in touch, the gastrocrom is helping me, I'll say I had some "gas" the first day or so from it but it does seem to be helping now, my entire GI system seems calmed down a bit, so I'm really happy about that.

I can't find a single doctor anywhere that has dealt with this disease before, my GI doctor has heard of it and tested for it (my biopsies were positive), but I think I'm her first patient with it.

Let me know how the allergy testing goes, we can share info.

Susan

Braunson's-mom Rookie
Braunson's-mom
Posted

My son is 2 and 1/2 and also has the esophlic (sp) and he takes singular and zyertc everyday. He is also glutten free. My son has to stay completely away from glutten, ornages and chocolate, cocoanut and seeds. There is so much he can't have but it beats dh and vomitting all the time. He also can't have oral antibiotics because they make him sick and has allergy induced asthma and in allergic to albuteral. We find stuff all the time that upset his gi tract. The dr said he is just going to be one of those kids that we will always have to be very careful with.

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pixiegirl Enthusiast
pixiegirl
Posted

Well its nice to know I'm not alone is the diagnosis of this disease... but I'm sorry to hear your son has it. the list of foods I'm allergic too would knock you over, eating for me has become a challenge, but I'm coping. I'm doing a rotation diet to see if I actually react to the foods I've tested allergic too.

Susan

lamood Newbie
lamood
Posted
  • Author

Thanks for the replies. We just went to an allergist this week. She said we have to eliminate dairy, all grains and wheat, tomato, and citric acid. She said to stick with corn, rice, potato, soy etc.

So, it looks like it will be a very expensive trip to the health stores this weekend. I am afraid it will be very hard for my daughter to adjust to the gluten free diet.

Good news: she is feeling better since starting the gastrocrom. She isn't in constant pain after eating.

pixiegirl Enthusiast
pixiegirl
Posted

Excellent I'm so glad to hear its helping her, its helping me a lot too and it says on the package insert it can take 2-4 weeks for the full effect, so I figure I'll feel even better in another couple of weeks.

You know my daughter needs to avoid gluten, when she eats it she gets a stomach ache, she is also allergic to peanuts and tree nuts. We are slowly weaning her off of gluten and its not as hard as you might think. She loves corn tortillas so we are using a lot more of those and I make the bread by Anna, they are wonderful and she loves them:

Open Original Shared Link

Kids can still snack on potato chips, there is a ton of gluten-free candy, corn chips, tortilla chips, pudding... really when you start to look there is so much gluten-free food available and a lot of it is good. She really doesn't miss much gluten food except pizza (we still have not found a pizza crust we like).

Again really glad to know your daughter is feeling better.

Susan

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