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Celiac Going Dormant


JodiC

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JodiC Apprentice

I don't know if this is true or not and can't remember where I read it. I heard that after a certain age Celiac will go dormant and than will show up again around puberty. I had my kids tested at ages 4 and 5 and they were all negative despite having symptoms. Someone told me (or I read it) that I should wait and retest them around puberty. Any advice on this???


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tarnalberry Community Regular

Yes, for many people, symptoms subside, or change dramatically (so they no longer think it's celiac) during their teens and twenties. That doesn't mean damage isn't being done, or that it isn't celiac, of course. Retesting them periodically (every few years) while they have symptoms, if they have the genes, is probably a good idea. If they don't have th genes (or you don't know if they do), retesting again in five or ten years is a good idea. But would also encourage trying them on the diet, now, to see if it makes any difference in their symptoms.

quantumsugar Apprentice

1. I've heard that as well

2. That's what happened for me--I had lots of stomach problems as a kid, doctors thought it was all in my head.... got better for the rest of my childhood (though I was constantly having health problems, many not-GI related). I started getting sick again around high school and it got much worse before I finally learned what was wrong.

If they're having symptoms but not showing positive test results, it's your call--I would be a lot healthier now if I hadn't had years of damage from eating gluten. On the other hand, a number of things (like school) can be more difficult without a formal diagnosis. If you don't put them on a gluten-free diet now, I would definitely retest them later.

Good luck.

jerseyangel Proficient

I had stomach problems as a child--D after eating, felt faint at times. During my teen years, I was fine--did everything I wanted, ate everything with no problems. After C-section birth of 2nd child at 29, symptoms returned.

KaitiUSA Enthusiast

Symptoms can come and go at anytime but that doesn't mean that celiac comes and goes so getting them retested every so often is a good idea. Some people never get symptoms with it so you can't go by that.

ianm Apprentice

My symptoms would come and go. In my 20's the symptoms started lasting for longer periods of time. In my 30's they returned with a vengeance and never left until I went gluten-free.

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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