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I Think I Have Celiac Disease


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14 replies to this topic

#1 Cortneysmibro

 
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Posted 27 February 2012 - 03:27 PM

Ok this post may be a bit long. I am pretty sure I have celiac Disease. I have been online researching for YEARS what might be wrong with me. I have though everything from narcolepsy to cancer. It all started about 4 years ago while I was pregnant with my third baby. But I just figured then that it was all just symptoms of pregnancy. The tiredness after eating, my heart would race and pound out of my chest. Constant headaches. My hands and feet would feel like they where asleep for no reason at all. I was constantly foggy headed and some times dizzy. But after the baby was born a few months went by and I was still not feeling better. Then I started having issues with my gallbladder. My mom who is diabetic told me to check my blood sugar. It was fine, yet I still got SOOO tired after eating. Over the next few years it got worse and worse. I had forgotten about the connection between eating and the tired spells since it was about 20 mins to an hour after I would eat that they would come on. Some times it was so bad that I could not keep myself awake no matter how hard I tried. And coffee only seemed to make it worse. I tried vitamins, getting more sleep, you name it. The only thing that seemed to help was when I tried a low carb diet to lose some weight. I am horribly over weight, and no matter what I seem to do I just can't seem to lose it. But I started feeling less tired and foggy and more like myself. My complexion cleared up and my skin seemed less read and blotchy. I got less headaches and woke up feeling refreshed in the mornings. But I started adding other low carb bread products and high fiber things back into my diet and slowly I started feeling crappy again. So after years and years of just going down hill and feeling worse and worse I finally went to the doctor. She tested me for some things and sent me to a therapist. They therapist says I am fine and thought I had a hormone problem. the doctor says no. I have reactive mono..... well the symptoms are getting much much worse.My joints are starting to hurt all the time. Most days I have HORRIBLE diarrhea. I get so foggy headed I can't keep a train of thought. My hand and feet are always cold and tingling. I am so so so tired all the time. No one believes that I feel bad. To everyone, including my husband I look fine. I keep telling him that there is SOMETHING wrong with me. That I just don't feel good ever. He thinks I am lazy,I eat to much and I am crazy :( But I'm not lazy. I am just exhausted. I want to try cutting out gluten and see if I feel better but I have a feeling it will be expensive and since my husband does not think I have a problem he will not want me wasting money on special food. I guess I could just stick to meat and veggies and fruit. I was just wondering if this sounds at all like that's what I may have? I have done SOOOO much research and this is the closest to how I feel. "sigh" I wish I could go to more doctors until someone listened to me. But I have no insurance. so I am stuck with the only doctor I can afford around here.
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#2 kareng

 
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Posted 27 February 2012 - 03:33 PM

Did they check your thyroid? Are you anemic? Both things that make you feel tired & gain weight.
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#3 GottaSki

 
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Posted 27 February 2012 - 04:02 PM

Hello and Welcome!

I don't have a great deal of time to post right now, but try not to lose heart when docs tell it is either stress, hormonal or depression. Trust your gut.

If you can have a celiac blood panel run before you give up gluten.

Your symptoms are very similar to mine and it took doctors along with me researching everything under the sun to find Celiac at 42 years of age...I was going to them with similar symptoms since my early 20s.

Hang in there...and trust your gut!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 Cortneysmibro

 
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Posted 27 February 2012 - 04:03 PM

Did they check your thyroid? Are you anemic? Both things that make you feel tired & gain weight.

thyroid is fine. That was one of the first things the doc checked out. I am anemic, but I have been since 2002. But that only explains the tired part. That does not answer everything else. :(
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#5 mushroom

 
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Posted 27 February 2012 - 04:31 PM

You have not mentioned yet if your doctor has run a celiac panel for you. This is the first step in determining whether it is celiac disease. The celiac panel consists of the following tests:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

If these tests have not yet been run you should ask your doctor to do them for you. If they have, can you post your results with the ranges the lab uses (if you do not have a copy of the results, you should get them - this should be done routinely for all lab testing). :)
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#6 Lori2

 
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Posted 27 February 2012 - 06:28 PM

Having a doctor run a celiac panel first would be preferable. However, with no insurance and an unsympathetic husband, going on the gluten-free diet is probably your only option. With your symptoms, I would certainly give it a try.

Gluten free products are expensive and are unnecessary. I personally can afford them, but do better without them. I stick to meats, vegetables, some fruit and then add rice, rice cakes, yogurt (Iím not lactose intolerant) eggs and nuts. Itís a satisfying diet and itís possible to plan a family menu around them.

Give it a tryóit wonít hurt and could very well be the answer to your problems.
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#7 Ninja

 
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Posted 28 February 2012 - 09:20 AM

I've found the gluten-free products to be more of a nuisance than a help. Of course, it is nice to know they are there. Since, in science, there is claimed to be no such thing as true "zero" (in this area, anyhow), they allow a very small amount of gluten to remain in the product (<20pp). However, the more of that gluten-free food you eat, the more gluten gets into your system. This happened to me and it took awhile to figure it out. Luckily someone on here had posted about it!

Stick to the naturally gluten free whole foods; they're better on our bodies. :)

Good luck and don't be discouraged by the doctors. They say they've gone to medical school, but most seem to have just slept through it (lol). Either that or they need a "creative/outside the box thinking" degree in there as well.

~Laura
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#8 Skylark

 
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Posted 28 February 2012 - 10:36 AM

You could definitely be celiac. It's common to have it come on in pregnancy. If you can get tested, you want to do that before you go off gluten. You have to be on a full gluten diet to get accurate results. If you feel better off gluten you're not going to want to eat the stuff for three months to be tested down the road. If testing is simply not an option go ahead and try the diet.

It's really easy to eat gluten-free on a budget. You just have to avoid the temptation to get the overpriced specialty breads and cookies. Rice, corn, and potatoes will be your starches instead. You can make totally "normal" dinners. Roast a chicken with some potatoes and serve with a salad (gluten-free dressing) and veggies. Your family probably won't even notice that it's gluten-free. Cook a couple extra potatoes and you can make eggs and home fries for breakfast the next morning. :)

A lot of family favorites like pot roast, beans and franks (I have yet to see gluten in a hot dog and Bush's has some gluten-free baked beans), homemade chili, stir-fry (use La Choy soy sauce or San J gluten-free tamari sauce), and chicken soup with rice are easy to make gluten-free. A big pot of vegetarian bean soup is only a few dollars to make and it makes a great meal served with homemade cornbread.

Here's my cornbread recipe.
http://www.celiac.co...post__p__650717
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#9 Gemini

 
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Posted 28 February 2012 - 10:50 AM

thyroid is fine. That was one of the first things the doc checked out. I am anemic, but I have been since 2002. But that only explains the tired part. That does not answer everything else. :(


The anemia that you have had since 2002 explains a lot more than just being tired. :o You know, I was anemic my entire adult life, from 18 to 46, when I hit the wall with Celiac and almost died. Yup....many a doctor blew me off and told me I was anemic due to heavy periods. The problem with that explanation is I never had a heavy period in my life, until I went through menopause.
I can understand your anger and frustration, believe me, so get back to a doctor and have them run the tests posted and make sure you gluten up for the testing. After they finish with that, go gluten-free immediately and give it a good 6 months because it takes that long for things to begin to get straightened out.

Your thyroid may not be alright either...they tend to screw that up too. It would be helpful if you had the results to post because it's common to have thyroid issues with Celiac also.

You don't need a doctors permission to eat whatever you want so if you choose a dietary trial, then go for it and don't look back. Dietary trials can be more revealing than many tests they do.
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#10 Cortneysmibro

 
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Posted 03 March 2012 - 04:25 PM

Well I went ahead and just cut out gluten to see how I felt. I felt better almost immediately! What I thought was IBS, is GONE!!! No more headaches. I am not falling asleep or getting racing heart beats after eating! I am still very very tired and thirsty. My hands and feet are not tingling as much. I am still a bit fuzzy headed but I do not seem to feel as dizzy, or like the room is rocking when I turn my head. I did however discover that I must not be able to have soy either. I took a multi-vitamin this morning. With in 15 mins of taking it I was sicker then I had ever been from anything I have eaten. I started throwing up, got a horrible migraine, was so dizzy and fuzzy feeling. My body just tried to get everything out of it as fast as possible and in any way possible. :( It was horrible.It's been like 7 hours and I still do not feel 100% normal yet. SO I just learned that just because it says gluten free on the label does NOT mean that it will not make me sick. But other then that with or with out a diagnosis I think I will just stick to gluten free. I have not felt this good in years. I can only imagine how much better I will be a few more months down the road. I would love to go get tested but I honestly can't afford another doctor visit or more tests. I am already in dept to them for just shy of $1000.00 I can't keep adding more to it. I hate not having insurance. It stinks.
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#11 tom

 
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Posted 03 March 2012 - 05:31 PM

Well I went ahead and just cut out gluten to see how I felt. I felt better almost immediately! What I thought was IBS, is GONE!!! No more headaches.
. .. .. ..

Awesome.

... I hate not having insurance. It stinks.

Reminds me to wonder how long the US will continue to be the only industrialized country that seemingly has no problem with putting ppl into your position.
It stinks.

Remember to vote this November, everyone. (Ok not *every*one)
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#12 tom

 
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Posted 03 March 2012 - 05:37 PM

Forgot to comment on the multi-vit - some seem to have so many ingred it's tough to be sure which is a problem. Also, I've had them act differently depending on how much I ate w them.

That said, soy is pretty common in aggravating ppl w celiac.

Hope those other issues are improving.
Let us know. :)
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#13 Skylark

 
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Posted 03 March 2012 - 06:08 PM

That's great news that you feel so much better. B) I'd suggest you keep a food and symptom diary. That way if you react to something with a lot of ingredients or have delayed reactions you'll start to figure out a pattern.
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#14 adab8ca

 
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Posted 03 March 2012 - 07:31 PM

Listen to your body. SO many of us were told "it's stress". I knew it wasn't freaking stress and that something was terribly wrong,so do you! I am SO happy that your gluten-free experience seems to be leading you in the right direction.
Many many healing hugs
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#15 AVR1962

 
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Posted 03 March 2012 - 11:17 PM

Another thing that is not uncommon while pg is gestational diabetes. I had it with my 3rd child, made me quite sick. My iron levels were too low and my bllood sugar too high, not a good combo. Iron supplements and taking carbs out of my diet helped alot.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.




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