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i have been having all the symptoms of celiac since 1999.just was told it was celiac


Jane Phillips

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Jane Phillips Newbie

i have had these symptoms since 1999. i thought the shock of my husband dying did it to me. it continues all these years tho. i have eaten so much immodium over the years since that is the only thing that woud calm my diarrhea and cramps down, i took my mom to a gastro dr and asjked him before he left room what he thought was wrong with me. that i thought i might have ibs. he immediately said i think you are celiac. take all gluten out of your diet. plus eggs corn and anything else i have noticed has bothered me out f diet.  so i did and i got better. then today i ate with my mother and had corn and one piece of fried chicken. well i have been in bathroom since leaving her house. i did not dissect the food before eating. now im paying for it, of course as soon as i got hit with an attack i knew what had happened. the chicken was battered with flour and i ate corn,  so im back on high alert of all food again.


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trents Grand Master

Welcome to the forum, @Jane Phillips!

Though gluten (a protein found only in wheat, barley and rye) is the kingpin food ingredient that must be avoided in celiac disease, many celiacs find there are other foods they do not tolerate well. Common among them are dairy, oats, soy and eggs. Some of these additional sensitivities often disappear in time as healing of the small bowel villous lining progresses, which can often take two years or more, even after going gluten free. 

Without formal testing, it is impossible to tell for sure whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms. NCGS is 10x more common but there is no definitive test for it. Celiac disease must first be ruled out. But if you wanted to be tested for celiac disease you would need to go back to eating heavy amounts of gluten for several weeks or the testing would be invalid. It may not be worth it. At the end of the day, the antidote for both conditions is the same: total abstinence from gluten for life. 

It is easy to avoid "macro" amounts of gluten gut it is included in the food supply in so many ways that are hidden or not obvious there needs to be some education. Then there is the whole problem of cross contamination. Eating out safely is the biggest challenge. Here is a primer that may help: 

 

Scott Adams Grand Master

Welcome to the forum! I'm sorry to hear about your husband.

Make sure that your mother and other first degree relatives also get tested for celiac disease, as 30-40% of first degree relatives also have celiac disease. 

Also, you can still have fried chicken, but it needs to be made with gluten-free ingredients. Here are some recipes:

https://www.celiac.com/search/?&q=fried chicken&type=cms_records2&quick=1&search_and_or=and&search_in=titles&sortby=relevancy 

 

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    • Scott Adams
      This is such an important discussion! While corn gluten (zein) is structurally different from wheat gluten, emerging research suggests some celiac and gluten-sensitive individuals may still react to it, whether due to cross-reactivity, inflammation, or other factors. For those with non-responsive celiac disease or ongoing symptoms, eliminating corn—especially processed derivatives like corn syrup—might be worth exploring under medical guidance. That said, corn’s broader health impact (GMOs, digestibility, nutritional profile) is a separate but valid concern. Like you mentioned, ‘gluten-free’ doesn’t automatically mean ‘healthy,’ and whole, unprocessed foods are often the safest bet. For those sensitive to corn, alternatives like quinoa, rice, or nutrient-dense starches (e.g., sweet potatoes) can help fill the gap. Always fascinating (and frustrating) how individualized this journey is—thanks for highlighting these nuances! 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:    
    • Scott Adams
      I’m so sorry your little one is going through this. Celiac recovery can take time (sometimes months for gut healing), but the ongoing leg pain is concerning. Since his anemia was severe, have his doctors checked his other nutrient levels? Deficiencies in magnesium, vitamin D, or B12 could contribute to muscle/joint pain. A pediatric GI or rheumatologist might also explore if there’s concurrent inflammation or autoimmune involvement (like juvenile arthritis, which sometimes overlaps with celiac). Gentle massage, Epsom salt baths (for magnesium absorption), or low-impact activities like swimming could help ease discomfort while he heals. Keep advocating for him—you’re doing an amazing job!
    • Stuartpope
      Thank you for the input. We go back to the GI doctor in June- she wants to do more labs to check vitamin levels( not sure why the didn't check all at once with the iron being so low) and recheck inflammatory levels. Just trying to find him some relief in the meantime.
    • trents
      Welcome to the forum, @Stuartpope! With Marsh 3b damage to the villous lining of the small bowel, your son is likely deficient in a number of vitamin and minerals due to poor absorption, not just iron. B12 and all the other B vitamins are likely low. I would suggest looking into a high quality gluten-free B complex, D3, magnesium glycinate (the form of magnesium is important) and zinc. A children's multivitamin likely will not be potent enough. We commonly recommend this combo of vitamins and minerals to new celiacs as adults. Thing is, you would want to consult with a pediatrician about dosage because of his young age. In time, with the gluten-free diet his villi will rebound but he may need a kick start right now with some high potency supplements.
    • Stuartpope
      Hey yall!  New Celiac mama trying to help my son! My 3 year old was just diagnosed with Marsh 3b by a biopsy. We started this journey due to him being severely anemic (ferritin levels 1.2) He has had  3 iron infusions to help with the anemia. He has also been gluten free for a month. He is still having leg/ joint pain( he described a burning/ hurting) Im trying to help with his leg pain. He has trouble playing ( spending most days on the couch) He tells me 5/6X a day that his legs are hurting. Gets worse when walking or  playing. We have done OTC pain meds/ heating pad/ warm baths. What else can I do to help him be a kid.     Thanks for the help 
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