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Asymptomatic Gut

kdskaggs

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kdskaggs Newbie
kdskaggs
Posted

Hi all,

I wrote last week about my newly diagnosed 12-year old Celiac daughter. I spoke today with my Naturopath about her being positive and whether I should be tested. Interestingly, he told me that the Interstitial Cystitis I have had for 20 plus years and the pancreatitis attack I had 18 months ago could be caused by Celiac disease, even though I don't have gut symptoms. He told me to go ahead and have the test so we would know for sure. The thought that Celiac could be the cause of these things is amazing to me. I have been eating the gluten-free diet, along with my daughter and the rest of our family. Do I need to start eating gluten again for the blood test? I emailed my primary care doctor today to get the test ordered. My ND also explained that her low positive blood counts could be explained by the fact that she never did eat a lot of gluten, just enough to register a positive Celiac.

Has anyone here tested positive for celiac disease, had no gut symptoms but other diseases that could have been caused by celiac disease?

Kenda

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celiac3270 Collaborator
celiac3270
Posted

Not me--

But I can say that the majority of celiacs are asymptomatic, which is precisely why most celiacs aren't diagnosed, and since they don't think anything's wrong with them or their doctors don't check for celiac, most of the people here on the board are symptomatic celiacs.

It's definitely possible and very likely that you can have celiac even w/o symptoms-- after all, there is 1 out of every 130 people that have celiac.

KaitiUSA Enthusiast
KaitiUSA
Posted

I had no symptoms as well. Until my immunity went down with mono thats when I started having problems. They told me I have had celiac for years though and I never thought anything was wrong growing up. celiac3270 is right....celiac is very underdiagnosed. You could still have celiac and have no symptoms.

kdskaggs Newbie
kdskaggs
Posted
  • Author

Thank you "Bush", Kati and celiac3270! I'm anxious to get tested. I've had Interstitial Cystitis for over 20 years. Since I started eating healthier in the past 5 years, it has improved tremendously. I'm wondering now if it's because I stopped eating the typical America diet and less gluten.

My immune system is very weak and I have trouble gaining weight. I have weighed 95 pounds most of my adult life, I'm 5'4". I finally have been able to gain up to 100 pounds, eating 6 times per day. I weight train 3 times per week, do yoga twice weekly but don't build muscle. I am also anemeic, even when I take iron supplements. Celiac definitely makes sense.

I have been eating gluten-free for close to a week now because I have started cooking this way for my celiac daughter. How much gluten do I need to eat before having the celiac blood test. I sure don't want to mess up the test by being gluten-free.

Thanks again for the kind help.

Kenda

flboysmom Rookie
flboysmom
Posted

My husband does not have the classic "gut" symptoms. His symptoms are fatigue related. His thyroid levels also fluctuate, ranging from extremely low to normal when he cycles on and off with the chronic fatigue symptoms. Since going gluten-free he is feeling much better and his energy level has soared. He has also had lifelong rashes on his thighs and arms that have gone undiagnosed. We suspect that they are DH.

celiac3270 Collaborator
celiac3270
Posted
My immune system is very weak and I have trouble gaining weight. I have weighed 95 pounds most of my adult life, I'm 5'4". I finally have been able to gain up to 100 pounds, eating 6 times per day. I weight train 3 times per week, do yoga twice weekly but don't build muscle. I am also anemeic, even when I take iron supplements. Celiac definitely makes sense.

I have been eating gluten-free for close to a week now because I have started cooking this way for my celiac daughter. How much gluten do I need to eat before having the celiac blood test. I sure don't want to mess up the test by being gluten-free.

Those are a few good examples--a lot of people, also, don't have excessive flatulence and loose stools, but instead are shorter than others, are very low or very high in weight, are constantly fatigued, and have other related disorders. Your difficulty in gaining weight is a classic celiac symptom that I also have. Anemia is very common in celiacs (since nutrients aren't being absorbed while you're on gluten and your villi are destroyed).

I think you should try to stay on gluten as much as you can, particularly if it doesn't cause you great pain (symptoms). If you're cooking gluten-free at home for your daughter, it might be easier to eat lots of gluten while you're out of the house (a muffin, doughnut, or bagel in the morning, a sandwich at lunch, etc.) but make sure you get in enough. The idea is for the doctor to see the damage. One week isn't bad at all, but you're better off staying on gluten so you won't influence the results at all (for example, an inconclusive biopsy).

kdskaggs Newbie
kdskaggs
Posted
  • Author

This is amazing, I also have chronic fatigue and thyroid problems as well. I am really excited to get the celiac disease test. I plan on eating gluten-free, along with my daughter, anyway but I'd love to know if this could be part of the reason I am the way I am.

How about messed up female hormones, are they a symptom? I might as well pin everything on celiac disease> :)

Kenda

Those are a few good examples--a lot of people, also, don't have excessive flatulence and loose stools, but instead are shorter than others, are very low or very high in weight, are constantly fatigued, and have other related disorders. Your difficulty in gaining weight is a classic celiac symptom that I also have. Anemia is very common in celiacs (since nutrients aren't being absorbed while you're on gluten and your villi are destroyed).

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flboysmom Rookie
flboysmom
Posted

I'm just quickly adding that my husband's blood panel was positive, however the biopsy was negative. After much research and both of our sons having symptoms we decided to go gluten-free and see if it helped. It has greatly changed the mood in our home.

celiac3270 Collaborator
celiac3270
Posted
How about messed up female hormones, are they a symptom? I might as well pin everything on celiac disease> :)

I just ran a search:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

There's a lot on hormones--this was a bit on female hormones.

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