Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Esonophilic Colitis And Celiac?

lamood

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.