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sneezydiva

Finally! My Long Health Mystery Is At An End

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I don't know if anyone remembers me. I wasn't sure where to put this post, hope its the right place. I found this forum this past summer. I posted a post with my history, but can't seem to find it.

To make a long story short, I always was a sickly, skinny kid. I had bad seasonal allergies that became year long allergies in college. After I got married, my allergies got out of control. Despite maximum allergy therapy including shots, I continued to get worse, and yet most doctors dismissed me as a hypochondriac, whose allergies simply couldn't be as bad as I said they were. Then I developed digestive problems and severe stomach pain which led me to a gastro, who gave me an endoscopy for an ulcer. Unfortunately, he didn't think to check the small intestine. But after that was negative, the gastro's P.A. listened patiently to my whole health history and tested me for celiac disease. After reading about it, it rang a bell, not just with my problems, but my poor grandmother who also had many health problems, including stomach problems and severe osteoperosis. I was convinced I had it, but the blood test was negative. I tried the diet anyway, and immediately felt better. Then I moved across the country, and while in transit, did my best, but essentially ate gluten-lite.

Once the dust settled with the move, I embarked on the diet in earnest, and began to feel wonderful. No more stomach pain, constipation and diarhea, sinuses cleared up. I really thought I had my answer. But then ragweed season hit, and I was more miserable than ever. Did I imagine my improvement? I decided to stay on the diet until my sister's wedding, and then use the reception as gluten challenge. I had a great time at the wedding, but the next day, I felt like I was hit by a truck. So it wasn't in my head. Reading books about gluten sensitivity convinced me I have it.

Well, with my allergies out of control I got a referral to a very good allergist who I was able to convince to test for food allergies (All my previous allergists wouldn't except one, who used a very unreliable blood test.) Yesterday was the big day--and the wheat was my only food allergy.

So I finally have my "answer". In many ways, I feel vindicated. I want to wave the results in all my former condecending doctors' faces. It is now in my record and all future doctors will have to take it seriously. Though in my heart I feel this is more than allergy, at least now I can tell people I am allergic to wheat, without feeling guilty or weird about it. It was the answer I was looking for. So why do I feel so sad?


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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You probably resent that the medical system let you down for so long!!!

I'm wondering if non-wheat gluten (barley, rye, or oats) bother you, too. If so, I would guess that you do indeed have either celiac or gluten intolerance (aka "pre-celiac").

Either way, welcome aboard, and I hope you feel less sad as you hang out here! We have lots of great recipes here, and lots of fun learning from each other and sharing what we've learned.

There's a great thread around here somewhere where we complain about the worst doctors we've ever seen. Join in! Or start your own thread! (Wait--you just did, didn't you??? :D )

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Welcome! I believe my life was one long misdiagnosis as well starting at 12 when I started getting what was diagnosed at age 21 as "IBS" teenage years with "eczema" now believe it was DH right up until 2 months ago at age 59 when an endoscopy concluded I had Celiac Disease

It's great being with others and sharing finding out others went years w/o a diagnosis as well and it isn't "all in your head"


Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis

Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)

Diagnosed Hashimoto's Disease/Hypothyroid November 1994

Low B12 November 2006

Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it

Gluten free since October 2006 after failing gluten challenge

Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007

Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)

Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.

Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

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I think it is common to feel sad when you have to give up something you enjoy, even if it is for your health. With gluten I started out feeling all brave & strong, at least when I was testing it. When I got the Enterolab confirmation it struck me like a ton of bricks. Of course, it didn't help that I was told I had problems with two things I had never suspected.

I allowed myself a couple days to mourn my old diet. Then I was over it.

I occasionally have twinges of sadness when I see a wonderful crusty bread served to my table in a restaurant, or they come by showing off their gluten-y desserts. But those are far outweighed by my happiness in having a normally functioning intestinal track. Happiness is a Good, uh, well you know. I spent a childhood with loads of laxatives and enemas, and my adulthood was only marginally better. So I'm now in my mid 50s and finally having my dream poo's. I guess at some point the novelty will wear off and I will get past my anal stage. :lol:

Your allergies may improve by going dairy free. Have you ever tried this? Here is one site mentioning this; I'm sure there are others:

http://au.health.yahoo.com/041101/25/1u66.html

I had symptoms that seemed to be allergies, but skin prick tests found nothing. Nonallergic rhinitis, the doctor said. Meaning basically, well you seem to have an allergy, you react to antihistimines like you do, but we can't find anything. I suffered for years, particularly in getting sinus infections from the constant dripping, then cut out dairy for another reason entirely. Years later, not another sinus infection. I was getting them several times a year for decades. Not one doctor told me about dairy. And not one told me to take probiotics after finishing my antibiotics. (Turns out, I recently read, that antibiotics don't appear to even help sinus infections.)

Definitely see if you react to barley and rye. You also will want to look for gluten-free oats. All regular oats in this country is cross-contaminated with wheat. Of course, if you react to barley and rye, you may need to go slow on introducing oats.

Finally, check your personal care products. I found wheat in my hair gel.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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You know what made me kind of sad? Maybe you're feeling a little of this too:

It made me feel sad when I reflected on all those years that I lost to this. For me, it was depression/anxiety, mostly.

I feel much better about it now that some time has passed. Now I'm just thankful that I can move forward & I'm happy to live my life without the gluten issues.

Take care :)

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Thank you all. I think I feel a combination of all the feeling all of you mentioned: anger and resentment towards the doctors who misdagnosed me, all my life, and especially the last 10 years. I am sad and resentful over all the time I lost. And hathor you hit the nail on the head about it hitting me like a ton of bricks, despite being so strong while testing things out. It's sort of like before I was making a choice to try the diet. Now I have no choice but to stick to the diet

Thanks for your support. This really is a great forum.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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