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New Member - Blood Testing Showed Positive, Going Gluten-Free


thecatlady

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thecatlady Rookie

Hello,

I had the blood testing three months apart and both showed 'positive' for Celiac Disease. On the other hand, I am not showing vitamin deficiencies and I do not take a daily multi-vitamin. I suppose it may be possible my intestines aren't severely damaged yet.

My PCP and Rheumatologist have asked me to go on a gluten-free diet now as the blood tests are coming back positive. I also have Postural Orthastatic Tachychardia Syndrome which they think gluten-free may help. I do have some odd symptoms, and if gluten-free helps, it will be worth it.

I also get hives from cashews...but my allergy tests show negative for nuts. I am finding it hard to avoid nuts AND gluten. I'm just starting to compile what I can/can't eat and I can't believe how much food has wheat in it! Plus, I eat a lot of pasta, sandwiches, etc. so I'm struggling finding a new diet and I plan on going shopping this weekend.

Any advice to a beginner?


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RiceGuy Collaborator

Firstly, blood tests for deficiencies aren't always reliable. Many times, vitamin supplements help even when tests suggest that your nutrient levels are in the so-called "normal" range. Many on this board report feeling better with supplements, even though in some cases it puts the test results in the upper range. Additionally, some nutrients like B12 can be deficient for some time before a test reflects it, because the body robs organs and tissues of B12 in order to keep the level up in the blood.

Moreover, once you're gluten-free, you might find (as many others do) that you need supplements to feel better. That's one odd thing about going gluten-free - many report feeling worse before feeling better. Researchers are still trying to figure out why.

As for foods, if you can eat other nuts besides cashews without a problem, then I'd suggest that. Also, some seeds can be ground into seed butters in place of nut butters. For pasta, try Tinkyada brand. IMHO, it is better than any wheat pasta I've ever had (I used to eat a pound of pasta nearly every day, and not the cheap stuff either). For breads, the best is the one you make yourself. Gluten-free breads tend to go stale very quickly, so freeze what you don't use right away. Many here suggest slicing it up and wrapping individually, so you can take out only what you need, rather than thawing out the whole thing just for a few slices.

But the best advice on starting out gluten-free might be to start simple. It is probably best NOT to try to replace all your favorites right away. Begin with fresh veggies, fruits, beans, grains, nuts and seeds, meats, etc. Buy them plain, and cook from scratch. This will limit the chances of accidental "glutenings" and CC (Cross-Contamination). It is also much healthier than all that prepackaged stuff. Your body needs the nutrients. Once you're comfortable with this, then try some of the specialty gluten-free items out there. Many will be disappointing, but you'll likely find more that suit your tastes by waiting awhile before trying them. One reason is that many experience a kind of gluten withdrawal. During this period, it can be tough enough without the noticeable difference in taste/texture of the gluten-free stuff. Researchers are finding that there is strong evidence that gluten act on the brain in a similar way to opioids like heroin. I found this out first hand when I tried Tinkyada pasta for the first time. Though it is very good pasta, the thing I found "missing" was actually the effect of gluten on the brain. I didn't experience the high I had with wheat pasta. But once you get over this, and the brain finds a new "comfort zone" for itself, gluten-free foods can be just as delightful. Different yes, but it doesn't always mean icky (though there are some really icky products out there).

Also, you'll need to replace any wooden spoons and cutting boards, scratched non-stick pans, cast iron pans, and anything that can harbor gluten, as it is so very sticky. This includes colanders and strainers, pasta cookers, etc. Anything with nooks and crannies or irregular surfaces that are difficult to really clean well. Smooth-surfaced items like stainless steel pans and glass bakeware usually can be cleaned well enough. If you want to toast gluten-free breads, you'll need a new toaster too.

Lastly, look over your skin/hair care products for gluten containing ingredients. Cosmetics too. Shampoos and hand soaps often contain things like wheat/barley extracts.

HTH

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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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