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Feel Like Giving Up!

raea2002

By raea2002
in Coping with Celiac Disease

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raea2002 Apprentice
raea2002
Posted

I feel like giving up on my gluten-free diet. My primary dr is no help. Went to see a GI dr he said I have acid reflux and gastritis. Put me on acid reflux meds and told me not to take any ibu for my headaches. I get frequent headaches especially when I'm eatting gluten, I mean daily. When I don't eat gluten I get maybe 1 a week. But I cannot take anything for them. My pcp says that I don't have celiac prob gluten intolerant and left it at that. No guidance no nothing. My head hurts but I'm not supposed to take anything? What kind of a life am I living. I have acid reflux, gastritis, ibs, lactose intolerance, headaches, muscle/joint aches, frequent miscarriges, no energy but yet no one is addressing any of my issues. Acid reflux here's a pill, gastritis, take no pills, ibs, avoid foods that bother u, lactose intol, avoid milk, headaches take ibu, oh wait I cannot because of gastritis......and it continues on.

My husband who is super supportive I'm sure is tired of hearing me complain. This diet is expensive! I'm so discouraged. I'm going to see a new pcp but cannot get in until Tuesday.

Do I eat gluten again until I see her and see if she will run the whole range of gluten tests or just keep going Gluten-Free? It's been 2 weeks.

Help please!

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Skylark Collaborator
Skylark
Posted

After just 2 weeks gluten-free I'd suggest you go back to eating gluten and get tested for celiac. The gastritis, muscle aches and miscarriages are all signs of celiac disease. I know the headaches must be miserable but it's really helpful to know if you have the autoimmunity becasue it puts you at risk for other autoimmune diseases. You'll also know how strict you need to be with the diet. People with celiac cannot eat wheat even occasionally, even if they might not feel anything from a small amount of gluten.

IrishHeart Veteran
IrishHeart
Posted

I agree with Skylark.

Be tested while still on gluten, but your symptoms sure sound like celiac disease to me. (in fact, you sound just LIKE me!--even the frequent miscarriages, "IBS", migraines, etc...).

Please, be insistent that you have the celiac tests run.

If they come back negative, it still may not be conclusive and we can help you from there. (I blood tested negative--as do many of us)

The diet does not have to be expensive or difficult.

But, first things first--get tested. Hang in there.

Tell us what happens!!

raea2002 Apprentice
raea2002
Posted
  • Author

Sorry I guess I should say that I've only had 1 blood test that came back negative. I had an EGD done that said I have acid reflux and gastritis. The dr said I had erosion where my stomach meets the small intestine and that's all he said. Since I'm going to see a new pcp should I go back to gluten so she can run her own tests and ask for the full range of blood work? I just don't know what to do anymore. Thanks everyone.

Skylark Collaborator
Skylark
Posted

Gosh, you're not getting very good care. That's nothing new though. Did your doctor take celiac biopsies on the EGD and do you happen to know which test came back negative? You just have so many gluten intolerant or celiac symptoms I'd hate to see you go without a proper workup. :huh:

IrishHeart Veteran
IrishHeart
Posted

Gosh, you're not getting very good care. That's nothing new though. Did your doctor take celiac biopsies on the EGD and do you happen to know which test came back negative? You just have so many gluten intolerant or celiac symptoms I'd hate to see you go without a proper workup. :huh:

Same here!! and I have the same questions.

kittty Contributor
kittty
Posted

Can you take something else for your headaches, like Aleve, that doesn't contain ibuprofen?

I had GERD/acid reflux for a couple of years. At one point it was so painful I thought it was a heart attack and was rushed to the ER. From my experience the medication does nothing. I tried just about every one there was - prescription and non-prescription - and never had any success. It eventually died down on it's own, and only flared up again when I was under extreme stress. I haven't had any heart burn at all since switching to gluten-free though.

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raea2002 Apprentice
raea2002
Posted
  • Author

From my understanding I cannot take anything. I told him I do not even take ibu I take excederin. With the gastritis I guess I cannot take it. I meet with a new pcp on Tuesday. Hoping this goes away soon or I'm taking something and dealing with the consequences.

raea2002 Apprentice
raea2002
Posted
  • Author

You all have been GREAT thanks for all your help!

Skylark Collaborator
Skylark
Posted

From my understanding I cannot take anything. I told him I do not even take ibu I take excerine. With the gastritis I guess I cannot take it. I meet with a new pcp on Tuesday. Hoping this goes away soon or I'm taking something and dealing with the consequences.

Once you get your celiac testing done properly, you should definitely try gluten-free. You might get substantial relief from a lot of your problems. :)

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