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Not Celiac After All? (this Is Urgent)


Serversymptoms

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Serversymptoms Contributor

I'm starting to conclude that I may not be Celiac after all. I've only experience changes with absence of gluten due to a introduction to new food in my diet, and say healthier ( like high consumption of Vitamin D lately), prompting better health conditions. I remember re-calling many improvements I began to notice, and so thought on what I just stated above and the improvements in areas... thought of what I have been consuming in high amounts ( I guess Vitamin D and Calcium are a few) and looked their benefits online. What I found in Vitamin D benefits are many improvements I've noticed.

Few benefits:

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I do see my doctor June 1st, and instead of being tested for anxiety I think it's urgent that I'm tested for allergies. Have anyone experience/ know anyone who found not to be Celiac but thought so due to better choices of food? Could this likely be my problem? I have seen little to no changes in the lump on the back of my head, I think I will go and consume wheat and see my reactions. It may be likely that I could be allergic to something in the air, or something else.


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FMcGee Explorer

Hi! Did you get the blood work done? That can give you some guidance here (but you have to be eating gluten when you get the it done so you don't get a false negative).

northernsunshine Newbie

Sounds like you need piece of mind. Get tested for Celiac and then move on if it isn't the problem.

Serversymptoms Contributor

So stop my gluten free diet and get tested first? Or eat gluten a day or two before testing/ doctors?

nikki-uk Enthusiast
So stop my gluten free diet and get tested first? Or eat gluten a day or two before testing/ doctors?

I'm not sure how long you've been gluten-free :unsure: but if it's for any length of time it is recommended that you go back on a HIGH gluten diet for SIX WEEKS before you have any tests

Good Luck :)

ang1e0251 Contributor

My assistant's son had lumps on the back of his head/neck and it was related to ongoing sinus problems. When those were addressed, the lumps slowly went away.

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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.
    • Paulaannefthimiou
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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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