Desperate!

[Ranne10]

I

[eatmeat4good]

I lived like that for most of the last 8 years.

Then I came here and found out I have Celiac.

I was unable to get out of bed or off the couch.

Dr.'s said "fibromyalgia" "migraine" but it was really My Grain Headaches.

Don't feel desperate.

You are already feeling better.

You might have figured it out for yourself.

Nevermind what the Dr.'s say.

Bunch of Dr.'s didn't believe me when I knew something was seriously terribly wrong with me.

Now I can use my muscles, my body, and my mind.

Thanks to Celiac.com.

I considered testing for about 24 hours.

But I knew I never wanted to go back to eating gluten to find out if a Dr. could agree that gluten was the problem.

Gluten was the problem.

No muscle weakness.

No sores (DH)

No Migraines

No Fibromyalgia

No IBS

No Anxiety

No Depression

No Gluten.

Welcome to the rest of your life.

You are not wasting your effort.

Doctors don't know how to diagnose Celiac yet.

All the symptoms you describe are consistent with Celiac.

The vitamin deficiencies will take a bit longer to correct with supplements, but your fatigue should improve and your vitamin levels should improve if this is your answer.

Other intolerances are common with Celiac, particularly with long-term undiagnosed Celiac.

It took months to get my full energy back, but I did have major improvements fairly soon, just as you have had.

The exciting part is getting to watch yourself heal and age backwards. The proof will be that the labs will show the vitamin levels as they improve adn correct as you begin absorbing better.. that is if you decide to forego testing.

You don't have to eat gluten again if you don't want to.

[Takala]

Get rid of any doctor that says "you can't have......." based on test that were done years ago. That is beyond idiocy.

[ravenwoodglass]

Welcome to the board.

You have a positive blood test and are responding well to the diet.

Your symptoms are classic celiac symptoms.

There is a reason you are deficient in all those vitamin levels.

You don't need a doctors permission to be gluten free but if you feel you need a formal diagnosis for any reason, (to encourage other family to test, work or school accomodations etc) then get back on gluten and get to a different GI. You do need to be warned that your symptoms may come back even worse when you add gluten back in while waiting for the biopsy appointment.

You may want to talk to your GP about what happened at the GI and ask if he will give you a formal diagnosis based on drop in the positive blood test a few months post gluten and your resolution of symptoms.

[nora-n]

a biopsy done years ago does not prove you cannot have celiac!

What IgG tests were positive?

[Ranne10]

a biopsy done years ago does not prove you cannot have celiac!

What IgG tests were positive?

It was the S. Ceravisliae AB (ASCA) IGG. It was positive but the doctor said it probably wasn't significant because my Tissue Transglutaminase IGA was only 2 and the biopsy from a few years ago was negative.

Which is the total IGA? Is the Serum or the Transglutaminase?

They want to do a video capsule test in 4 weeks. By that time I'll be 6 weeks on the diet. My husband wants me to eat gluten and do the test. I'm finally feeling better. Not sure it's worth it?

[nora-n]

Here in Europe we often do the gluten challenge and get an official diagnosis, but on this forum the views are that if you definitely feel better off gluten, you most probably have celiac or gluten intolerance.

I think the S. Ceravisliae AB test is just for candida or the like and has little to do with celiac (but several of us do have antibodies to yeast too)

and there is a Celiac.com article on candida and celiac, citing a Lancet article https://www.celiac.com/articles/695/1/Does-Candida-Albicans-Trigger-the-Onset-of-Celiac-Disease/Page1.html

I bake bread with baking powder for that reason.

The Serum IgG sounds like the total IgG.

The transglutaminase IgG is a celiac test.

Consuming too little gluten is a common reason for not getting diagnosed, note those on the larger dose all relapsed after a gluten challenge Open Original Shared Link

[nora-n]

Here about the "biopsy was done some years ago and was negative" : Open Original Shared Link

"Abstract

AIM:

To make a prospective assessment of close family members of patients with coeliac disease (celiac disease) by testing their endomysium (EMA) and antigliadin antibodies once a year over a period of 12 y and to investigate whether and when they would develop a positive serology for celiac disease while on a gluten-containing diet.

METHODS:

Since first-degree relatives of celiac disease patients have a high prevalence of celiac disease, we screened 92 children and adolescents, all first-degree relatives of coeliac patients, for EMA and total IgA antibodies, once a year.

RESULTS:

Among 11 relatives, at the time of the first screening, 6 already had a positive serology and histology for celiac disease, while 5 became positive only after a period of 2 to 5 y of negative testing. The jejunal mucosa biopsy of these five relatives with retarded positive serology for celiac disease showed a flat mucosa in four of them and a partial villous atrophy in one. They were all HLA DQ2 positive and clinically silent for celiac disease.

CONCLUSION:

celiac disease can manifest itself after years of negative serological testing.

"

[Ranne10]

Thank you all! This site is such a blessing. After four weeks gluten free I am feeling so much better. I feel like each new day I'm free of it the more I feel human again. Six weeks ago I told my husband I thought I was dying. Today - I feel like living again. I have had a couple of set-backs and those were discouraging. One day I thought I was 100% on my diet but I felt horrid. I spent two days in the bathroom so ill. I decided to go back and look at what I had that would have caused it.

It was a tiny pill! I never considered medicine! It was something I don't take on a regular basis. When I looked it up, sure enough it has a gluten warning.

I have also learned from reading this site that the tests my GI doctor ordered were not the normal celiac panel. He just ordered a couple of them while looking for a crohn's diagnosis. My Primary care doctor reviewed all my results and she does believe it's celiac. She has ordered more tests including the genetic ones. We have agreed that it's not worth it for me to go back on gluten just to get the biopsy. I am perfectly content to keep on this track and see how good I feel in six months!

[gonnabeglutenfree]

Thank you all! This site is such a blessing. After four weeks gluten free I am feeling so much better. I feel like each new day I'm free of it the more I feel human again. Six weeks ago I told my husband I thought I was dying. Today - I feel like living again. I have had a couple of set-backs and those were discouraging. One day I thought I was 100% on my diet but I felt horrid. I spent two days in the bathroom so ill. I decided to go back and look at what I had that would have caused it.

It was a tiny pill! I never considered medicine! It was something I don't take on a regular basis. When I looked it up, sure enough it has a gluten warning.

I have also learned from reading this site that the tests my GI doctor ordered were not the normal celiac panel. He just ordered a couple of them while looking for a crohn's diagnosis. My Primary care doctor reviewed all my results and she does believe it's celiac. She has ordered more tests including the genetic ones. We have agreed that it's not worth it for me to go back on gluten just to get the biopsy. I am perfectly content to keep on this track and see how good I feel in six months!

Congrats!

I am in the same boat but only about to start my second week Gluten Free. On another thread, I have literally flopped back and forth about wanting a proper diagnosis or not. From a doctor who spent all of 5 minutes with me and brushed my concerns off as "IBS" and suggested I "eat some yogurt" - and buddy...I already eat yogurt everyday AND take probiotics so that people in the same elevator with me won't die. That's not normal.

You have figured this out for yourself.

Maybe you're celiac or non-celiac gluten intolerant.

Either way, it makes us feel like crap when no one else in the room is affected.

We can do this! We can start to live again. It is a wonderful feeling.

I might consider retesting someday....but it would be with a different doctor that I have learned to trust. Can OB/GYNs order celiac panels? Because she is the only sane doctor that I see these days and has been my doctor the longest...

Hope you continue feeling better Ranne!!

[Ranne10]

Hi Gonnabe!

I feel like a person who was going down for the last time and someone just threw me an unexpected life saver. I still have 'bad' days when I don't know what I've done wrong (from what I understand that can happen for some time.) But overall I am thrilled that this is working.

I considered eating gluten again, my husband wanted me to, but now that he sees the difference in how I feel he agrees I shouldn't. He is even attempting to eat gluten free with me as much as possible just to make it easier (he's a sweetheart.)

I wish you the best of success!