Terrified Of My New Gluten Free Frontier.

[Valkyriedoom]

I have had health issues for about 20 years, since I was about 8, mostly severe stomach problems. I was diagnosed with ulcers at age 9, and then over the past several years have been diagnosed with IBS and repeatedly put on anti anxiety or antidpressants for my 'nervous stomach' When I was about 8 I started having severe nausea and vomiting any time I ate anything. It got to the point where everything made me sick and I lost so much weight I nearly had to be hospitalized. Over the years I have continued to have the same symptoms as well as cramping bloating discomfort chest pains fatigue muscle and joint aches and the inability to gain any weight. This whole time doctors have been telling me all my issues are simply just stress causing my stomach to be upset. The last straw was 3 weeks ago when I started having severe intestinal bleeding and the ER doctor told me I had the stomach flu and sent me home. After all the tears and frustration, my mother decided we should look into gluten intolerance or similar things because of some specific symptoms I have. When ever I eat cookies or bread, I start coughing alot and sometimes break out in a rash. I don't have insurance so I can't be tested, but it's been 3 weeks since I stopped eating gluten and I feel better then I have in my entire life. What I'm wondering is if celiac or gluten intolerance can cause symptoms like mine.

-intestinal bleeding

-stomach cramps

-bloating

-fatigue

-weight loss

-nausea

-coughing when eating certain foods.

Any advice would be appreciated

[Dixiebell]

Welcome Valkyriedoom!

-intestinal bleeding Yes

-stomach cramps Yes

-bloating Yes

-fatigue Yes, make sure to get vitamin and mineral levels checked, you could be low in some.

-weight loss Yes

-nausea Yes

-coughing when eating certain foods Yes, could be reflux/heartburn causing this.

Lots of people here have been diagnosed with IBS before finding out they had celiac.

Celiac tests to ask your Dr. for:

Total iga serum

Tissue Transglutamas Iga & Igg

Antigliadin Iga & Igg

Endomysial Antibodies.

I wish Dr.s (not all of them) would not put a 'stress label' on so many people. My Dr. put the label on me too and my tests for celiac were negative. I wish they understood that being sick can stress you out. I have been gluten-free for six months and feel so much better (no meds anymore). So even if your testing is negative, you could go gluten-free for a few months and see how you feel.

You have come to a good place to learn a lot and ask many questions!

[luvs2eat]

You can go gluten free w/o any testing and if it makes you feel better than you've ever felt... perhaps a formal diagnosis isn't important! On the other hand, IF a formal diagnosis IS important... being gluten-free before testing may mess w/ the results.

Don't be afraid of gluten free eating/cooking. We just have to do things a little differently, that's all. There are tons of naturally gluten-free foods and more and more substitutions and recipes to make things we can no longer buy easily.

This forum will become invaluable to you! You can find an answer to ANY question you have!!

Welcome!

[scouter99]

My doctor actually suggested I just go with the diet and forgo the testing (unless I really wanted to be scoped)... if I feel better then I can just keep it up! So unless you really need that formal diagnosis (some people have mentioned it would allow them to use FMLA time) don't worry about it and go for the diet!!

Personally- my biggest problem with not having a diagnosis thus far is that when the gluten and dairy free diet doesn't seem to work for me (I do have good days but still have an awful lot of bad days too, but only at this about a month so far) I have to question whether it is because:

1. I still need longer to heal enough to feel better consistently

2. I am getting c/c somehwere

3. I have more the just gluten/dairy issues and need to eliminate more stuff

4. I am not a celiac and something else is wrong with me

Good luck... this really is quite a journey!!

Denise

[txplowgirl]

Hi Valkyrie, Yes, it can be overwhelming at first but like anything else, it gets better with time. If you want to be tested you have to go back on gluten. The longer you are gluten free the less antibodies to gluten you are making and can cause a negative test. You have to be on a full gluten diet. The equivelant to 2 to 3 pieces of bread for about 2 months and even then there are high negative tests.

So, there are a lot of

us here who decided not to even try the tests and went gluten free immediately then in a few months or a year or so do a gluten challenge.

But we have all discovered we get too ill to continue for tests and say to heck with it. We know gluten makes us sick, we don't need a piece of paper to tell us that.

Hang in there and welcome to the group. My advise is read, read, and read some more. This place is a treasure trove of information and good people who will answer any and all questions.