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Finally, A Diagnosis That Might Help?

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Hi everybody! I'm Emma, I'm 26 and happily married with a household of animals. I've actually been exposed to and working in health care my whole life; right now I own my own business as a doula. As a doula I attend women in labor, providing emotional and physical support. I love my job, but it's tough with my health problems.

I've been terribly frustrated and down on myself healthwise most of my life. It's really affected my self esteem in some ways. Sometimes it feels like a new problem pops up every week. But I know I'm not a hypochondriac, and I'm not blowing anything out of proportion.

Here's a brief rundown:

Depression and GI issues from the age of 14 or 15.

Gained 100 lbs between 16 and 17, winding up 300 by the time I graduated from high school. Definitely depression related.

Colonoscopy at age 17, negative. Diagnosed with IBS.

Lost 60 lbs with the Atkins diet in 2002.

Began having general muscle and joint pain as well as uterine pain in 2006, age 22.

Developed chronic gastritis from constant use of NSAIDs in 2007.

Diagnosed with endometriosis and fibromyalgia in 2007.

Surgery for the endo in 2007. It really helped!!

Endoscopy for gastritis in 2009. Doc noted stomach irritation but provided no help.

Single, unrepeated seizure in 2009.

Since 2007, I've been basically coping as best I can with pain every day. I am not as bad off as some folks- I have described myself as having a "mild" case of both fibro and endo. But it's been getting progressively worse despite my focus on exercise and eating healthily; I've tried medications, but nothing has helped except the depo shot for endometriosis. I've just gotten used to having my entire belly hurt all the time and having random pains in ridiculous places. My docs basically told me that it was mainly psychological and stress-related.

Lately though, since last summer, I've been a housewife/working from home. There is literally no stress in my life. I've been doing yoga for years and I took up meditation; when I had stomach pains bad enough to send me to the ER, I knew I'd done all I could and it was on the docs to make this better, if it could be made better. I had basically concluded that there WASN'T anything anyone could do and I just had to live with it.

But after two weeks of crippling stomach problems, I finally called a nutritionist, who immediately sent me for celiac testing, even before she saw me. It's hard to believe that wheat- my old friend!- could be doing all this to me. There have been many times when my gastritis was so painful that all I felt like eating was white bread, plain, or cooked plain pasta.

Anyway, I've been drawn to the Paleo diet for some time now- I've known that low fat, carb-heavy diets wouldn't work for me. They just don't make me feel good. Now that I've had my blood drawn for testing, I am going gluten-free for the most part, working my way up to all gluten-free all the time. I don't want a biopsy, no matter what the test results say; I am truly, thoroughly sick of seeing doctors and I no longer care if they think I'm celiac or not. I want to see how I feel once I'm off gluten.

One question I have is about living with a gluten lover. If I'm gluten intolerant, what steps should I take to make sure there's no cross contamination? Can I still kiss him after he eats gluten? LOL

Also, even though he's very sympathetic to my pain and wants nothing more than for me to get better, he's skeptical of issues without a diagnosis. For example, I seized when I was by myself, and it was the single most terrifying event of my life to wake up on the floor, vomiting and in incredible pain; I immediately pursued it with a neurologist, but all their testing showed nothing whatever. Now my husband says he doesn't know what to think, and he doesn't believe that I really seized; he thinks I just passed out. The seizure itself isn't super important, but it's tough for me to hold my ground against his disbelief. If my testing for celiac disease comes back negative, I know he will view me going gluten-free as unnecessary and extreme. How do you cope with people who want a solid diagnosis before they'll support you whole-heartedly?

I'm really happy this forum is here! After I spoke to my nutritionist for the first time, and she said very confidently that celiac seemed very likely for me, and that in any case she could heal my gut, I sat and cried. I had given up all hope of a life without pain and exhausting bathroom trips. It's unbelievable and a little scary to think that it could be this simple.

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Celiac.com Sponsor (A8):

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Sometimes what it takes to convince skeptical loved ones is the results they see when we get strictly on the diet. If you return to good health gluten free then it is obviously something that your body needed. You do have to be careful of cross contamination and yes your SO should brush their teeth before kissing. Your in a good place to learn what you have to do to be as strict as you need to be to get results if gluten is an issue as being gluten light won't stop the antibody reaction. Ask any questions you need to and read as much here as you can. It may be helpful to have your SO read a bit here also to help increase his understanding.

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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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