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Uncertainty


stennis07

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stennis07 Newbie

I am getting tested in the upcoming weeks for Celiac (I'm not too excited about the whole...tube-down-the-throat thing.) I was given an upper-GI thing and it came back negative...but the blood work came back VERY positive, so odds are, I prolly have it.

But, I'm very hesitant (and stubborn) about actually having it--denial maybe?-- because I feel perfectly FINE. Last June, August, and October I had SEVERE abdominal pain+diarrhea+bloating+intestinal gas+ I was hyperventilating because I was in so much pain (which made matters worse cuz I couldn't feel my hands/ dizziness). It put me in the ER the 2nd time (TGF morphine). And the 3rd time I was reluctant to have Vicadin. ALL 3 TIMES lasted from 9-15 hours of non-stop pain----BUT THEN I WAS MIRACULOUSLY FINE!! I had popcorn directly coming home from the hospital! *Sigh*

Those are the only times it's happened...so I'm very unsure. Of course, what do I know.

I am an avid runner, and I am scared that cutting gluten out of my diet will also cut my energy for this coming track season---I'm gunna need some alternative carbs...

HELP?


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CarlaB Enthusiast

Did they biopsy during your last endoscopy?

Positive blood test does most likely mean you have it. Even if the biopsy comes back negative, you should try the diet. You may find symptoms you didn't even know you have go away. Damage is spotty, and sometimes they find it with the biopsy, other times they don't. Biopsies can only confirm celiac, it can't rule it out.

There are PLENTY of other carbs you can eat!! There are a lot of gluten-free foods -- hot cereals, cookies, bread, etc. Plus the stuff that's naturally gluten-free -- rice, potatoes, corn meal. Trust me, carbs are not a problem to worry about!! ;)

Be sure you are eating gluten right up until the time of your biopsy.

kbtoyssni Contributor

My chiropractor asked me about my diet last night and I said gluten-free to which he replied "oh, so you don't eat many carbs, do you?" I told him I eat a ton of carbs - just in the form of rice, corn, potatoes, quinoa, veggies, etc. I'd say I eat just as many carbs as I did before.

RiceGuy Collaborator

Though I don't put much faith in tests, with such a positive result it's hard to ignore. Especially when many report negative and borderline results, even when the gluten-free diet does wonders for them.

If Celiac was not so seemingly likely, I'd say it might be a candida infection, or a reaction to MSG. There are numerous posts on these which you might find helpful in deciding if they are a possibility for your case, and a Google search will turn up loads of info on these too.

As stated by others, there are plenty of carbs in gluten-free foods. For instance, tapioca pudding is essentially all carbs until you add the fruit or whatever. In addition to the ones mentioned, there's also millet, buckwheat, teff, amaranth, and more. Buckwheat isn't related to wheat, nor is it even a grain. Roasted (typically called Kasha), it makes a mighty tasty hot cereal IMHO, and I often use it in place of or in combination with other grains which gives me even more variety.

happygirl Collaborator

There are many Celiacs that are referred to as "asymptomatic" or "silent" Celiacs. You do not need symptoms to be a Celiac.

stennis07 Newbie

THANK YOU MUCH!

Thanks for the feedback...helps a lot!

BTW---yea... I didn't know that about the symptoms thing...so maybe I DO have it :blink:

My one test said something like " under 20 is negative to this test....and anything above 30 is positive."

MINE WAS 200.

So, ya. I should really learn to pay attention to numbers....and not be so stubborn about givin' up my wheat.

ALSO--the doctors post-poned my "tube-down-the-throat" test because I have a cold, so I'll prolly be tested in a month or so and they told my mom over the phone to immediatly stop eating the wheat>>BUT everything I've read over the internet says different>>that it will alter my results :(

Hmm...maybe if I lay off...a happy medium?

CarlaB Enthusiast

If you want the biopsy to be accurate for diagnosing celiac, then you need to eat gluten right up till the biopsy. The gut heals. If it's healed there will be no damage for them to find.

If you want the biopsy just to be sure everything else is okay but believing you have celiac and need no further proof, then you can give up gluten now. But I thought the whole point was to further test for celiac ...


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    • trents
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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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