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Am I Celiac? Negative Blood Test


Oats

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KendraAnn Newbie

I am in need of desperate help! For several yrs now I have been having what I now consider "reactions" to gluten. I never thought I could have Celiacs.

After eating anything with gluten in it I experience:

Abdominal bloating (to the point that I look about 6-7 months pregnant)

Abdominal pain (severe enough that I went to the ER once after a bowl of special K cereal)

Awful gas that can clear a room in seconds

Pure liquid diarrhea ( resembles turning the faucet on. Thats how liquid it is)

Itchy hands to the point Id like to chop them off

Then for a few days after Ill be exhausted, have joint pain, and headaches. I have awful mood swings. No sex drive (my poor husband), oil like substance on the surface of the after a normal bm and one of the more frustrating symptoms is no matter how much I eat, Im always hungry!!!

I tracked my food in a journal and it all points to gluten. If I eat the gluten-free version of something Im Ok.

I recently went to the dr and had blood work done. I had Tissue transglutaminase IGA, and IGA Immunoglobulin A done both were neg!!! I have the biopsy tomorrow.

I thought for sure it would be positive :( i feel like people think im making things up bc I "appear healthy".

Any thoughts???

Hi HGMama, I too had negative blood work, but I had a postive biopsy. I have been gluten free for 13 days now and overall am feeling better. "Normal" bowel movements (haven't had that in over 10 years!), basically no acid reflux, but I have been having gluten withdrawals resulting in headaches for all 13 of these days so far. I've read that it might take 2-3 weeks for the withdrawals to subside. What were the results of your biopsy? Good luck!

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Oats Newbie

Hello! It's been a long time! I am now as good as symptom free.

After going gluten free for a while (and getting better), I went back to eating wheat & co. I didn't react. I think that maybe any stomach irritation would make gluten hard to digest! 

 

Right now, I only occasionally get acid reflux, mostly after eating fatty food (which also gives me stomach aches at times!)

My period went normal after starting the pill at my doctors request. She also found an ovarian cyst, which may have wrecked havoc with my hormones (which were a little out of balance - to little of this, too much of that)

 

 

Also, the doctor found out I had mononucleosis antibodies, which suggests that my stomach problems could have been long lasting after effects of that.

 

I have some friends who also got better from not eating gluten, but then did not get worse again from eating it again. I think that ruling out gluten completely might often not be necessary even if it makes your symptoms ease after a week or two, because it would most likely do that with any stomach problem! 

 

Thanks for your support, and good luck!

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foam Apprentice

I've got the feeling you will get sick again eventually on gluten. I'd just do the gene test and if you have DQ2 then don't eat gluten ever again. That's the only way to be sure.

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    • trents
      Yes, the yeast could have been cultured on a wheat substrate. But another batch may use a yeast extract cultured on something else that did not contain gluten. These food companies will switch suppliers according to what is the cheapest source at any given time. I take it you are a pretty sensitive celiac.
    • Tanner L
      The regular cheddar and sour cream Ruffles have yeast extract, which is probably the source of gluten.  Pinpointing the exact cause of gluten exposure is always tricky, but I've come to learn my initial reaction to gluten compared to the ongoing symptoms that will occur days, weeks, and sometimes months later.  
    • plumbago
      Yes, that's probably best. (Honestly, that is an extraordinarily high number, I've never seen anything like that. I repeated my blood tests (not taken while pregnant BTW); before giving up cake, pizza, and beer, I wanted to know for sure! You don't wanna mess around with anything while pregnant. Congratulations and best of luck!
    • trents
      Here are the ingredients listed for the regular sour cream and cheddar Ruffles: Potatoes, Vegetable Oil (Canola, Corn, Soybean, and/or Sunflower Oil), Maltodextrin (Made from Corn), Salt, Whey, Cheddar Cheese (Milk, Cheese Cultures, Salt, Enzymes), Onion Powder, Monosodium Glutamate, Natural and Artificial Flavors, Buttermilk, Sour Cream (Cultured Cream, Skim Milk), Lactose, Butter (Cream, Salt), Sodium Caseinate, Yeast Extract, Citric Acid, Skim Milk, Blue Cheese (Milk, Cheese Cultures, Salt, Enzymes), Lactic Acid, Garlic Powder, Artificial Color (Yellow 6, Yellow 5), Whey Protein Isolate, and Milk Protein Concentrate. CONTAINS MILK INGREDIENTS. Here are the ingredients listed for the baked ones: INGREDIENTS: DRIED POTATOES, CORN STARCH, CORN OIL, SUGAR, MALTODEXTRIN (MADE FROM CORN), SALT, SOY LECITHIN, DEXTROSE, WHEY, WHEY PROTEIN CONCENTRATE, ONION POWDER, CHEDDAR CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), MONOSODIUM GLUTAMATE, BLUE CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), CITRIC ACID, ARTIFICIAL COLOR (YELLOW 6 LAKE, YELLOW 5 LAKE, YELLOW 5, YELLOW 6), SKIM MILK, NATURAL AND ARTIFICIAL FLAVORS, GARLIC POWDER, LACTIC ACID, DISODIUM INOSINATE, AND DISODIUM GUANYLATE. CONTAINS MILK AND SOY INGREDIENTS   They look a lot the same except for the baked product contains soy. What do you suppose is the hidden source of gluten in the regular Ruffles that is not found in the baked ones? Could you be mistaken in attributing your reaction to the Ruffles? Could it have been from gluten in something else you ate around the same time or even a non-gluten tummy event?
    • Katiec123
      @plumbago on my blood tests I got 4500 and normal should be between 25-30 but they wanted me to continue eating gluten until a endoscopy was done and also biopsies taken. I’ve took it upon myself to cut gluten out today based on the research I’ve done about it during pregnancy 
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