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So Confused


Portageegal

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Portageegal Newbie

I was recently found to have Celiac Sprue. When I went back after my endoscopy (6 weeks after it) the Dr. told me that is what the biopsy showed. I have IBS also and knew what a gluten-free diet was all about. I had a blood test and the numbers were in the normal range. Through his nurse I was told to keep eating like I have been. I really want to start gluten-free, but it is hard because I am on disability and live in a rest home and unless I have a Drs. order I am sort of 'up the creek'. I will see my GP this week and see what he says, but I am really nervous. I understand the part about any gluten can cause a reaction, but is the reaction as severe with a little as it is with alot? I called the Medicaid office and they said that the home does NOT have to provide me with a special diet. (can you belive that?????)

Carol


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KaitiUSA Enthusiast

If you were diagnosed through a positive biopsy then you need to start a gluten free diet right away. Gluten in any amount is bad. There is no levels of celiac but there are levels of symptoms. Some people get bad reactions with small amounts and some people get no symptoms with it whatsoever...in either case any amount needs to be avoided. A little bit of gluten in the diet is equal to not following it and damage will still be done..symptoms or not.

I am sure something will work out for you. Hang in there. :D

mytummyhurts Contributor

So why did they tell you to keep eating gluten? Are there more tests to do? Maybe they just want your GP to tell you what to do.

Portageegal Newbie

I don't know .... The GI is the one that told me that I had it, but at that time I hadn't been to this site and didn't know how serious it was or would have pressured him. Maybe he is waiting for my next visit, but that isn't until Oct. Well, my GP will be here tomorrow and I will see if he can get me some answers. If not I will have to switch GI's.

:angry:

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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. 
    • trents
      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
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • 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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