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#1 ynot

 
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Posted 10 July 2010 - 11:31 PM

Hi everyone,

I've been lurking since March 2010. I think I've read just about every post on the forum and I'm grateful for all the information that has been posted. So I guess it's my turn to contribute as best I can. I'll try to keep it short.

First, I have no diagnosis. I have not taken any tests. And I don't plan to. There were two symptoms that originally brought me to this forum.
1) A distended abdomen that seemed to get worse as the day went on.
2) Unreasonably horrible hangovers from a few beers.
Although the horrible hangovers didn't happen every time I drank beer, it seems like it was the majority. It was so bad I thought for a long time I was just getting food poisoning somehow, but none of my friends ever got sick. The hangovers usually lasted 2 days, complete with vomit, diarrhea, and super sensitive skin that hurt at the slightest touch.

After reading many posts here and identifying with many other symptoms I went gluten free in March. I don't know if I'm Celiac or gluten intolerant or it's all in my head. I do know I feel better. At four months gluten free, everything is better. Not perfect, but better. And I haven't had any more hangovers.

Here are a list of symptoms I have had that have improved in the last four months.
1) pencil thin, broken up, pasty/greasy stool
2) frequent bowel movements ( 6 times a day )
3) frequent urination
4) acne - face and back
5) sweaty palms and feet
6) irritability, anxiety
7) stuffed up nose
8) puffy/swollen face in morning
9) occasional light swelling in ankles
10) swollen knees
11) occasional numbness in fingertips
12) symptoms of reactive hypoglycemia
13) heart palpatations, skipping beats, and ensuing adrenaline rush
14) having a full stomach and still feeling starved - strange cravings which can't be satisfied
15) reoccuring lower back pain
16) muscle twitches - legs and arms mostly
17) muscle cramps - legs and feet
18) unsteady muscles ( for example - my whole left leg shaking when my foot is on the clutch )
19) arms going numb while sleeping
20) awakening with severe vertigo
21) painless bruise like spots which show up on the upper legs and hips after exercise

I do attribute the improvements in these symptoms to my change in diet, but I'm not absolutely convinced gluten is the problem. It could be the reduction in carbs or dairy or something else. ( I am nearly dairy-free, simply because I don't like much dairy )

I follow the diet fairly well. I read labels and I never intentionally ingest gluten. However, I am not extremely careful with cross contamination. I order fries when I'm hungry and there is nothing else on the menu to eat. I haven't worried about cutting boards or shampoos or anything like that. I figure I must have accidentally gotten some gluten many times, but I've never had a reaction. But then again, I never had the day in day out GI pain most celiacs get.

That's it for now.

ynot
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Gluten-free since March 2010.

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#2 ravenwoodglass

 
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Posted 11 July 2010 - 06:33 AM

Welcome, you do sound like you belong here. I can really identify with the horrible hangovers. The most puzzling thing for me about them was that I drank nonalcoholic beer. I couldn't understand how in the world I would have hangovers when I never got drunk.
Most of us do need to drop dairy or limit it at first. IMHO though it is not the limiting dairy or carbs that is resulting in the great improvement you are seeing. You do have the option of going back on a full gluten diet for a couple months for testing, but you do risk false negative results even then. There is also the option of going with Enterolab testing. As long as you have been gluten free for less than a year they would still be able to pick up the antibodies. Enterolab does not diagnose though, they simply tell you if you are making antibodies but you body doesn't produce antibodies to something it doesn't want.
Do ask any questions you need to and I hope you continue to improve.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Skylark

 
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Posted 11 July 2010 - 09:40 AM

:lol: Beer always wrecked me too.

If you feel better eating gluten-free it's not in your head. I'm glad to hear you figured out something that helps you feel better.

The full stomach/cravings and feeling starved is thought to be your body wanting particular nutrients it can't get because of malabsorption. You might feel even better on a good vitamin/mineral supplement. B12 is particularly helpful for folks with gluten intolerance.
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#4 ynot

 
ynot

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Posted 11 July 2010 - 07:14 PM

Thanks for the suggestions. I will look into some B12 supplements. On a related note, 15 or so years ago I followed a vegan diet. That lasted about a year. I know B12 must often be supplemented, but I never worried about it. I guess I just ate a lot of bread and tofu. Anyway, this is when I had my first ( of two ) really severe depressive episode. Not fun. I guess we could draw some conclusions.

It's interesting to hear that beer, even nonalcoholic beer, wreaked such havoc on others. I wonder if there is something unique about the way gluten in beer is absorbed. Beer really does seem to be the crack cocaine of gluten for me.

As far as testing goes, I don't really feel like I need it to stay on the diet. And I have no desire to challenge gluten.

Thanks again.
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Gluten-free since March 2010.




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