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Just Got Results Back-positive


Jennifer2

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Jennifer2 Explorer

Hi, I just got some blood work back.

Endomysial IgA and transglutaminase both came back positive.

Doctor wants me to start a gluten free diet. :o

So obviously breads, flour, grains etc is out :( , but I'm not sure what else to worry about?

Any tips on the adjustment?

Jennifer


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ravenwoodglass Mentor

Start out with whole foods, unprocessed. Fruits, veggies, fresh unpreseasoned meats, nut butters, beans, rice, unseasoned, potatoes, sweet potatoes. Try to avoid processed foods as much as you can. It is also a good idea to delete or strictly limit dairy until you have healed. Go easy on the specialty gluten free baked goods at first as many have ingredients that we don't commonly eat and if you should have an issue with say perhaps soy flour it will be easier to pinpoint the issue after you have healed. You also should spend some time looking over lots of the product threads as you will get a lot of info from them. The most important thing is if in doubt call the company that makes the item before you consume.

Jennifer2 Explorer
Start out with whole foods, unprocessed. Fruits, veggies, fresh unpreseasoned meats, nut butters, beans, rice, unseasoned, potatoes, sweet potatoes. Try to avoid processed foods as much as you can. It is also a good idea to delete or strictly limit dairy until you have healed. Go easy on the specialty gluten free baked goods at first as many have ingredients that we don't commonly eat and if you should have an issue with say perhaps soy flour it will be easier to pinpoint the issue after you have healed. You also should spend some time looking over lots of the product threads as you will get a lot of info from them. The most important thing is if in doubt call the company that makes the item before you consume.

Thanks!

I'll start with limiting dairy also. Is there a general rule of thumb as to how long it takes to heal, or how long I should wait before trying to add dairy back?

lizard00 Enthusiast
Thanks!

I'll start with limiting dairy also. Is there a general rule of thumb as to how long it takes to heal, or how long I should wait before trying to add dairy back?

I've always heard around 6 months before trying dairy again, but each person is different. Healing time depends on how much damage has been done and how strict you are with the diet.

At 6 months, my new GI would NOT do an endoscope on me to look for celiac because he said that chances of it being negative were pretty high. Whether I was fully healed or not, who knows. But I also didn't go years and years without being diagnosed. So maybe I didn't have a lot of damage to begin with...

Darn210 Enthusiast
Thanks!

I'll start with limiting dairy also. Is there a general rule of thumb as to how long it takes to heal, or how long I should wait before trying to add dairy back?

I think it's trial and error . . . some people don't even need to limit dairy. We didn't. I did give my daughter the lactaid chewables if she was consuming a "decent" amount of dairy in one sitting. I don't even know if we needed it. It's hard to get real feed back from a six year old. We stayed on the lactaid for two or three months but we also were fortunate that during her endoscopy the GI (at my request, don't know if he would have done it otherwise) took a sample to have her lactase level checked. It showed low but not too far out of the limits.

happygirl Collaborator

The Celiac Survival Guide ( Open Original Shared Link ) from The National Foundation for Celiac Awareness (www.celiaccentral.org) is a great resource.

Also, great information from the Gluten Intolerance Group (GIG) on getting started can be found here: Open Original Shared Link

Information on reading labels, safe foods, etc:

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

A great book to get started is "The first year - Celiac Disease and Living Gluten Free" by Jules Dowler Shepard.

LDJofDenver Apprentice

A few other handy things that you may not have thought of.

If you don't live alone, you


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Korwyn Explorer
Hi, I just got some blood work back.

Endomysial IgA and transglutaminase both came back positive.

Doctor wants me to start a gluten free diet. :o

So obviously breads, flour, grains etc is out :( , but I'm not sure what else to worry about?

Any tips on the adjustment?

Jennifer

One of the things that has been helping me survive has been: Living Gluten-free for Dummies (loaned to me by a friend) and also Gluten-free cooking for Dummies. Both excellent starter books.

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    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
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