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Celiac - for sure, likely, or other?
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Celiac - for sure, likely, or other?

It's hard to summarize in an Internet post, but here goes! I've had significant allergy and sinus problems all of my life. I'm allergic to weeds, grass, tobacco (skin tested twice, it's not just a chemical reaction to smoke for me), most animals, dust mites, molds, you name it. But not foods. Sinus problems have been a major issue too, frequently long lasting (several months typically) sinus infections. I've very recently learned through an ENT and a CT scan that I have a deviated septum and auxiliary ostia on each side, which means I have a second hole between my nose and sinus on each side. I have a great ENT, he explained it well with a diagram, but basically, the mucus recycles back into the sinus instead of draining properly.

I've felt especially terrible the last two years. Severe brain fog, feeling mentally not sharp, and fatigued beyond belief. All can be symptoms of allergies, but this is a new level of severity. I relocated to the Great Lakes area from California four years ago, and allergies are much worse here. I had similar, but less severe symptoms as I have now, when I lived in Minnesota for three years prior to living in California.

Stomach issues have been present, intense and sharp pain was common before being diagnosed with acid reflux, but pantoprazole has taken care of 99 percent or more of that. Stomach does sometimes feel off a bit, but it's not what I'd call sharp pain. I've always found the stomach is worse at times of bad allergies or sinuses anyway.

I have a lot of sluggishness and joint pain. I am overweight, 6' and just over 300 lbs, I've actually gained 60-70 pounds over the past year through all of this. I struggle to sleep if the stomach isn't full, the taste of sinus drainage just burns and makes me nautious.

I also recently learned I have a ttg score of roughly 73. Interestingly, it was another very good specialist - an allergist - who had seen similar symptoms in another patient who turned out to be celiac. He didn't diagnose it as celiac, but felt with that number on the ttg, it's likely to be so (which makes perfect sense).

But some things don't add up. First of all, there's no family history of celiac, but there is family history of Crohn's, colitis, and rheumatoid arthritis. My understanding is Crohn's and rheumatoid arthritis can also cause high ttg. I also have a ferritin level that's abnormally high - tested three times in one year, it's been between 800-1100 each time, which is inconsistent with the anemic levels typically found with celiac. To top it off, bread has long been the best thing to calm my stomach when it's off, including the worst of the acid reflux time period.

The blood work was done two weeks into a 42-day prescription for bioxin to treat chronic sinusitis. Four weeks before that prescription, I finished a 21-day prescription for bioxin. A week after the 42-day dose, I had a CT scan that showed there is no current sinusitis.

I'm planning to do the endoscopy/biopsy most likely (I haven't been able to see a gastro specialist since the ttg test results came back), but how likely is this celiac? Should I be looking at other possibilities - particularly Crohn's or rheumatoid arthritis?
3 Comments Post a Comment
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Avatar_m_tn
I should add - I have been tested specifically for hemochromatosis because of the ferritin levels, and the result was negative. Thanks for reading all of this!
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Avatar_n_tn
what is the range your lab is using for Ttg testing. Your Ttg levels seem pretty high.  I think the biopsy and endoscopy is a good idea--if they come back negative, you could try going completely gluten free---and then retest in about 3 months and see if your Ttg levels are falling---this should give you a good idea if your Ttg levels are raised because of celiac, or if it is chron's or RA that is raising the levels.
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Avatar_n_tn
There was no history of celiac in mine or my husband's families either, but we have 3 daughter's with celiac disease.  My husband and I and 8 of my 9 children all carry one of the main genes for celiac.
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