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tiredtwinmommy

Gluten Intolerance/celiac disease? Or Something Else (long)

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I finally got brave enough to post here, I know that becoming gluten free is a HUGE step. But I have wondered for a long time what was up with me. My name is Beth. I am 39, and mama to 3 1/2 year old twins. I want to be the best Mom I can be, but it is hard when I am sick a lot of the time. Let me start this way:

I think back when I was younger- I remember in 7th and 8th grade I would have HORRIBLE stomach pain right after lunch. I would wedge a book lengthwise between my tummy and the desk, the pressure on my tummy made me feel better. Then as a slightly older teen (19 or so) I remember being tired ALL the time, as well as depressed, although I really had no reason to be so. The tiredness and depression has been off and on for years now. Then I started having weight issues along with everything else, and my periods became irregular. As I got older, and before having kids, I started to occasionally wake up at night nauseous, sometimes throwing up for no particular reason. Then after having the kids (after LOTS of infertility treatments, another s/e of celiac disease), I got my rosacea outbreaks, my weight gains are worse, I get hungry all the time, I get terrible gas (frequency and smell), my stools are usually pretty loose and frequent now, I developed apnea (which I am STILL tired all the time, even with the CPAP), I am more prone to irritability/outright anger, and more depressed now. I also constantly seem to have sinus infections, and they are harder to get rid of. To me, all these things really point to at least gluten intolerance, maybe very slight when younger and just got worse as I got older/after childbirth.

I have had numerous and complete thyroid panels, all show normal. I had a false positive for lupus before I had the kids, but a more detailed blood test showed that to be a false positive. With my period cycles becoming longer and longer, I have had blood workups to check for early menopause- all showed normal... matter of fact, when we were diagnosed w/infertility, it was "unexplained" (oh, also I had had quite a few early miscarriages). My children were born prematurely, b/c of both my high blood pressure and the fact my daughter was not gaining any weight in the womb. My sleep apnea, was considered odd by my dr, b/c I was at my pre-pg weight when I was diagnosed (have gained 20 more pounds since then), and never snored or had appearance of apnea before that. My first indication of rosacea occured while going through infertlity treatments... when I would get upset my face would start getting large red blotches (these went away), and then one night I had a beer after not having one in a very long time and broke out in welts on my cheeks and nose- although I have not had that reaction to beer ever since, after the birth of my kids I started getting perm rosy cheeks that no medicine would cure.

So, what do you guys think? I really am thinking gluten problems. But I am a big chicken. Blood tests I can handle. Colonoscopies/intesting biopsies/endoscopies terrify me, particularly being such an easy gagger.

Thanks in advance for your help!

Beth

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Beth, go get the blood test before you go gluten-free! Many consider a blood test and positive dietary response to be enough proof for diagnosis (not docs, but celiacs :)).

It could be celiac disease.

Even if the blood test is negative, I'd still give the diet a trial.

Bacterial dysbiosis is another GI issue with similar symptoms to celiac disease, so you might also want to research it a bit.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Beth, go get the blood test before you go gluten-free! Many consider a blood test and positive dietary response to be enough proof for diagnosis (not docs, but celiacs :)).

It could be celiac disease.

Even if the blood test is negative, I'd still give the diet a trial.

Bacterial dysbiosis is another GI issue with similar symptoms to celiac disease, so you might also want to research it a bit.

Thank you. I called my dr and asked for the blood tests, and she told me I would have to go see a GI dr :( for that. So guess that is my next step. I will also research bacterial dysbiosis as well. Thanks for your quick response!

Beth

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I agree with Carla.

Also I think you have to consider what kind of diagnosis you need for yourself and why. Some want a gold standard diagnosis (positive biopsy) just for themselves as they know they won't stay on the diet without it. Some want it because of family and friends support--and those folk need "proof." Some want confirmation from medical people.

Some are simply content with the answer to "do I feel better when I don't eat gluten?" and don't need any further testing.

I think you should at least get the full blood panel (5 tests). If negative and you can't bring yourself to do the biopsy, you could consider Enterolab. You won't get a celiac diagnosis based on Enterolab, but perhaps some guidance about whether you react to gluten.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Hi, i just want to tell you that i can definately relate. I'm 20, and have for years been suffering from stomach problems. The fatigue- my first year of college it was so bad that i was going to bed at 5:30 pm, sleeping for 12 hrs, and falling sleep in class. I literally couldn't function. By that point i had been suffering from secondary amenorrhea since i was 12. My doctor ran thyroid panels, checked my liver and kidney function, ovarian cysts and tested me for lyme disease. -- it all came back negative.

Things seemed to get better, i went on an ubbber healthy diet, and got more rest, and then the stomach problems began. So much that i would sitting in a ball at work on the floor sometimes. And oh yeah...the gas. it was never ending.

Then came last march, when outside my physiology lab, i blackouted, and fell on my face. yeah. ouch. ended up in the hosipital, where they couldn't find out what had happened.

In my post-hospital check up with my doctor, she suggested i may have celiac. --but decided not to test me, since i have a healthy weight. decided i had symptoms of "IBS" instead, and told me to simply "stay away from trigger foods" (but failed to mention what they could be) and eat more fiber, though my diet before was not seeming fiber deficient. -- but despite doing both, or trying to at least, it didn't help

So i went on a fairly restricted diet, that excluded gluten/casein/soy/egg/yeast/corn.

And my stomach problems nearly disappeared.

I decided to go through enterolab and get tested for celiac. My tests should be back within another week or two. I may be celiac, i may be not. but changing my diet has really helped my stomach problems and other health issues.

I know how feel, and it's almost weird to read about someone who shares many of the symptoms i do, especially about the periods. I would advise you see your doctor.


Gluten and Casein intolerant

Allergic to soy

yes...i'm also a vegeterian

my favorite line from the Simpson's

All normal people love meat. If I went to a barbeque and there was no meat, I would say 'Yo Goober! Where's the meat!?'. I'm trying to impress people here Lisa. You don't win friends with salad." - Homer

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Thank you. I called my dr and asked for the blood tests, and she told me I would have to go see a GI dr :( for that. So guess that is my next step. I will also research bacterial dysbiosis as well. Thanks for your quick response!

Beth

Beth,

Your doctor may not have known which blood tests to order. My mom's doctor had no idea. In any event, this is the Celiac Panel--ask that they do the whole thing:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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