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Challenges


JodiC

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JodiC Apprentice

Okay, so I have been on a challenge for about a year and nothing. No symptoms, no D, no cramps, no pain, no weight loss, no irritability, negative blood tests and biopsies, (the original were positive) etc etc etc. What gives? I was gluten free for around 3 years before this and was not getting better so dr recommended a challenge and to come in if there were any symptoms like before (pathologist didn't agree it was celiac for sure). I have been feeling okay and don't have any of the symptoms as before? Dr is not sure either. Could the original blood tests have been a false positive (all others were always negative including the biopsies). All family is testing negative also (including my children). Doesn't at least one of your parents have to have it? I'm so tired of thinking about it and second guessing all the time. Just want to get on with my life and never think about food again. Shouldn't there be some kind of symptoms if it was truly celiac in the first place?


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The Fluffy Assassin Enthusiast
Okay, so I have been on a challenge for about a year and nothing. No symptoms, no D, no cramps, no pain, no weight loss, no irritability, negative blood tests and biopsies, (the original were positive) etc etc etc. What gives? I was gluten free for around 3 years before this and was not getting better so dr recommended a challenge and to come in if there were any symptoms like before (pathologist didn't agree it was celiac for sure). I have been feeling okay and don't have any of the symptoms as before? Dr is not sure either. Could the original blood tests have been a false positive (all others were always negative including the biopsies). All family is testing negative also (including my children). Doesn't at least one of your parents have to have it? I'm so tired of thinking about it and second guessing all the time. Just want to get on with my life and never think about food again. Shouldn't there be some kind of symptoms if it was truly celiac in the first place?

If I'm reading this correctly, 4 years ago you were suffering from symptoms that might be from celiac disease, you were tested, and were diagnosed with celiac disease, though your pathologist was unsure. So you went gluten-free for three years, but the symptoms didn't improve. So you started a gluten challenge and... you have no symptoms? They didn't get worse? They got better? Sorry, I'm not following. Did you never have symptoms in the first place? (What does "any of the symptoms as before" mean?)

I can't answer much, because I don't understand what you're saying, but there are certainly silent celiacs who have no gastrointestinal symptoms at all. If you're taking multivitamins, you could be more or less covering up most other side effects of celiac disease. Your intestine probably can't take in B12 (assuming you're celiac), but 3 years gluten-free would probably be long enough for you to have stored up enough to carry you, possibly for a year.

As to genetics, I think if both of your parents carried the trait as a recessive gene you could wind up celiac without either of them being one, but you'll have to wait on someone with better genetic knowledge to receive a more definitive answer.

Sorry I can't answer better; hope you find an answer soon.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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