Celiac Disease For Almost A Year And I Am Almost Sick

[Ashley25]

Hey everyone I am new to this forum and I have had celiac disease for almost 1 year and I feel like I am constantly sick and I never get better. I am very carefully with what I eat and I have not eaten out in months to see if that would help but I have not seen much of a change.Right now I have had nausea, abdominal pain, burning sensation, cramping a little, I am extremely fatigue and brain fog. I have been like this for almost a week and the anti nausea medicine they gave me is not helping much. I had this problem for two weeks straight about a week ago and my doctor gave me dexilant to see if it would help but it is not. This time around it is worse.

I was just wondering if anybody else has had any of these problems, and if you did what was the problem and what did you do for it, I will be seeing my doctor in a few days but I just wanted to know if anybody else has had this problem to.

[Georgia-guy]

Ashley, first I want to say welcome! Next, curiousity is killing me...is the 25 in your username your age?

Now down to the important stuff....how were you diagnosed? Have you had a follow up of the same testing to see if there are improvements (this would tell if you might be missing something and inadvertently glutening yourself)? I would strongly recommend keeping a "food and symptom diary" over the next few days until your doctor visit showing what you eat, when you eat, what symptoms occur, when they occur, and when they cease (if they cease). This will help determine if maybe a regular ingredient you're eating might have gluten. I'm not saying you're not checking like a mad lady with severe OCD, but the factory could have shared equipment for example. Also, check with the manufacturer of the medications you are on as they may contain gluten as well! Make sure your pharmacist knows you have celiac so they can keep an eye on gluteny prescriptions too.

[beth01]

Ashley-

 

First off, welcome to the forum.  This place is great for information and support.  Everyone here is wonderful and most helpful in trying to help with everything!

 

I will ask the questions that Georgia_guy didn't ask....  Do you have a completely gluten free kitchen or do you share it with others?  Cross contamination is a big issue.  How did you prep your kitchen to be gluten free?  Did you replace your toaster?  Old dishes/utensils that are scratched should be replaced, strainers are another ( all those holes with all that gluten stuck in em).

About foods, are you eating a lot off processed foods that are gluten free?  Some of them are tested down to 20 ppm but some people are sensitive and can't eat them.  Maybe try an elimination diet? Like Georgia said, keep a diary.  A lot of celiacs have other food intolerances, and an elimination diet will help figure them out.  Soy, dairy, corn seem to be the big ones.

 

I know you have been at this for a year, but maybe read the newbie thread and see if you missed anything. Good luck.

[dilettantesteph]

Lots of people have problems with continuing symptoms on the gluten free diet.  Just search this forum.  Some are still eating gluten by accident.  Some are sensitive to cross contamination.  Some have bacterial overgrowth, exocrine pancreatic insufficiency, and a long list of other things.  Look carefully at your diet and I hope that your doctor can help.  If you want help from us we would need a lot more details.

[S23]

I was told about the Specific Carbohydrate Diet (SCD) and have been trying that for about a week now. You should buy the book to really learn about it. But basically its a theory that gluten-free eating isn't enough sometimes to allow the body to really heal. And thats why those of us who have been eating gluten-free strictly are still experiencing symptoms. It basically focuses on eliminating disaccharides (all starches and sugars- Including potatoes, rice, all grains etc) Because they are harder for the body to break down. It's a very interesting read and filled with studies.

 

I cant give a full report on it as I've only been on it for a week. But a lot of people swear by it. It's hard, but it's given me a little hope and something to work towards as I'm super tired of being sick. 

[bartfull]

How about dairy? Lots of celiacs have trouble with dairy because the villi that are damaged are the part that digests dairy. Some lose it permanently but most get it back after a while.

[Shuchi Modi]

Hello Ashley,

It seems we are facing the same problem.

I was detected with celiac disease about 4 months back and I am on Gluten Free diet since then.

At first GFD actually worked for me with everything gradually falling into place. But now again the symptoms have come back despite being the fact I am still on Gluten Free diet.

Is there anyone who has faced similar situation and has overcome it? We would like hear suggestions.

I am tired of being sick now.

[calli]

Shuchi Modi,

There is another symptom called infractory celiac disease, and that is where the symptoms reoccur and don't get better. I've noticed too that certain ingredients effect me too. So, with this said I will get in touch with my doctor to see what is going on?

 

[kareng]

27 minutes ago, calli said:

Shuchi Modi,

There is another symptom called infractory celiac disease, and that is where the symptoms reoccur and don't get better. I've noticed too that certain ingredients effect me too. So, with this said I will get in touch with my doctor to see what is going on?

 

I think you mean refractory Celiac?  4 months gluten-free is a little early to diagnose that, I think. 

 

 

Open Original Shared Link

 

What is refractory sprue?

Refractory sprue is the term used when persistently damaged villi in the small intestine are not repaired after the gluten free diet has been successfully initiated and/or maintained, and Open Original Shared Link have been ruled out.