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Advice Please :-)


redheadednut

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redheadednut Newbie

Helllllllo!

Over the past couple of years, I've had freq stomach aches, diarrhea, 3-5 BM/day, excessive gas, bloating, mouth sores, etc. I usually have a BM right after I eat or sometimes even before I have finished my meal. I finally decided to seek help from a doctor this summer (before my health insurance runs out when I graduate from college this spring!). The doctor at my school referred me to a GI specialist due to my symptoms coupled with unexplained anemia. The blood panel showed "elevated anti sprue AB." As a result of that test, I was scheduled for an endoscopy. The endoscopy and biopsy both came back normal. I won't be able to talk with my GI doctor until my appointment in mid November (I received my endoscopy results in the mail), but I'm pretty sure I'll be stuck with the typical IBS diagnosis.

I am a little torn between what I should do since I have read on here that it is possible that the endoscopy/biopsy may have missed damage. Considering the possible ramifications that can come in the future for someone with celiac disease who doesn't follow a gluten-free, in addition to my current anemia, I am wondering if I should give the gluten-free diet a whirl. Although, I am hesitent to do so before I see my GI doctor again in case she wants to do further tests. I also kind of feel as though I would be giving myself a self-diagnosis/disrepecting her by doing so. AHHHHHHHHHH! I'm just sick of feeling yucky and getting a diagnosis/help is proving to be an incredibly long process! Do any of you have any advice for me?!

Thanks!

A


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KaitiUSA Enthusiast

I would definitely try the diet. Which blood tests were done? Some are very specific. Also, a biopsy can rule celiac in but it can't rule celiac out. If there is sporadic damage they can easily miss it and if it is in beginning stages you may not have damage yet.

AmandaD Community Regular

I would agree with Kaiti and make sure you had the TTG test done...do you know if celiac sprue runs in your family? Another option would be to have the HLA gene test actually done - you could ask your g.i. about this - for instance, we may do this for all three of our kids because then we'll really know whether or not they will develop sprue and whether or not we should be testing them every three years with the ttg test (i'm a biopsy-confirmed celiac myself).

(testing relatives every three years if they're related to a first-degree biopsy confirmed celiac is the newest medical recommendation)

my g.i also mentioned that since my bloodwork was positive, if the endoscopy was normal then we were going to repeat it again in 3 months and that would be the final yay or nay.

just some things to discuss with your doc...amanda

I would definitely try the diet. Which blood tests were done? Some are very specific. Also, a biopsy can rule celiac in but it can't rule celiac out. If there is sporadic damage they can easily miss it and if it is in beginning stages you may not have damage yet.

<{POST_SNAPBACK}>

Nevadan Contributor
Helllllllo!

Do any of you have any advice for me?!

Thanks!

A

<{POST_SNAPBACK}>

Hello A,

Since you have anemia, I would recommend getting a bone density test done to check for osteoporsis. Both are related to gluten sensitivity.

George

Guest BellyTimber

"if the endoscopy was normal then we were going to repeat it again in 3 months and that would be the final yay or nay"

3 months - that surely is too soon to be final

VydorScope Proficient

Odviously talk to your doctor before you take any adivce... not that docs are perfect, but they have your tests, and hisitory, and other data we do not. :)

BUT, if your celiac disease blood test is POSTIVE, then go gluten-free for life and forget futher testing. You have celiac disease. Its fiarly simple. :)

I created a thread a whiel go expliaing how the bisopy is NEVER NEGATIVE. Its only non-postive. Thats a big big difference. Non-postive tells you nothing for sure, while negative would be conclusive. Only a POSTIVE biosopy tells you anything in the case of the celiac disease test.

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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
      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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