Needing advise on Testing and the steps that need to be taken.

[Shauz]

Hi everyone

Here's my situation:

I was diagnosed with RA 3 years ago. About one and a half years ago I tried a gluten free diet. Which helped a lot with my RA symptoms. Thus at that time I came to the conclusion that I can control my RA on a gluten free diet. Sadly that only lasted six months. I then tried to go back on a gluten and that was a disaster. I felt like I was slowly dying inside. If food is cross contaminated, I feel a burning sensation in my hips and the muscles around my joints (I generally feel this after 45-90mins) and I have stomach issues for awhile. If I have gluten on purpose then I get headaches, nausea, painful stomach aches. Although I don't always get diarrhoea, the food that passes through, 30/40% is not digested. I personally feel that my reactions warrant a coeliac test. 

I recently went to a gastroenterologist which dealt with coeliacs to see if I have it. I left very demoralised. He was very dismissive of my symptoms and played it off as some mild inconvenience. I had to beg for a blood test. Which I did that same day.

I have two main concerns. The first is that I stopped eating gluten again about 1 year ago and my last exposure was about 2 mouths ago. I researched online to find out that I need to eat gluten for 6 weeks before the test. Does that mean the recent blood test was invalid and that I need to do it again after I have eaten gluten for 6 weeks? 

My other concern is about my health during those 6 weeks. My symptoms are high enough to impact my everyday life and I feel that my health would deteriorate quite rapidly during those 6 weeks. How can I approach this problem in the safest way possible?

Thanks (sorry about the essay.)

 

[Ennis-TX]

4 hours ago, Shauz said:

Hi everyone

Here's my situation:

I was diagnosed with RA 3 years ago. About one and a half years ago I tried a gluten free diet. Which helped a lot with my RA symptoms. Thus at that time I came to the conclusion that I can control my RA on a gluten free diet. Sadly that only lasted six months. I then tried to go back on a gluten and that was a disaster. I felt like I was slowly dying inside. If food is cross contaminated, I feel a burning sensation in my hips and the muscles around my joints (I generally feel this after 45-90mins) and I have stomach issues for awhile. If I have gluten on purpose then I get headaches, nausea, painful stomach aches. Although I don't always get diarrhoea, the food that passes through, 30/40% is not digested. I personally feel that my reactions warrant a coeliac test. 

I recently went to a gastroenterologist which dealt with coeliacs to see if I have it. I left very demoralised. He was very dismissive of my symptoms and played it off as some mild inconvenience. I had to beg for a blood test. Which I did that same day.

I have two main concerns. The first is that I stopped eating gluten again about 1 year ago and my last exposure was about 2 mouths ago. I researched online to find out that I need to eat gluten for 6 weeks before the test. Does that mean the recent blood test was invalid and that I need to do it again after I have eaten gluten for 6 weeks? 

My other concern is about my health during those 6 weeks. My symptoms are high enough to impact my everyday life and I feel that my health would deteriorate quite rapidly during those 6 weeks. How can I approach this problem in the safest way possible?

Thanks (sorry about the essay.)

 

Yes you have to be eating gluten for 8-12 weeks actually, at least once a day. Some find it easier to do by eating it before bed, Either a slice of bread, a few wheat thins, or a tsp or 2 of vital wheat gluten,
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The rebound of worse symptoms is pretty standard with celiac, almost all of us get MUCH worse symptoms to even tiny amounts after going gluten free.

Alternative ideas, the endoscope requires 2 weeks of gluten daily, and you can even get a "general idea" with a gene test. But 30% of the population have the gene but only 1% develop the disease. There have been a few rare cases of someone without the standard genes having the disease.

[CanIEatThis]

One of the ways to rule out celiac without eating gluten is to ask for the genetic test. If you don't have the genes, you can't develop celiac! If you DO have the genes, it doesn't mean you have celiac but you are more likely to get it. But if you have one or both genes and you want to move forward on a diagnosis, you do need to be eating gluten for your blood tests to be accurate. I've seen recommendations as short as two weeks, but generally it's more like six or eight weeks of gluten exposure. If you're concerned about the duration, ask your doctor to schedule a few blood tests spread out over the eight weeks so you might be able to catch it early (I had three in eight weeks, still tested negative by the end even though I have a lot of symptoms... sigh!). Also make sure they do a baseline IgA test to rule out an false negative by IgA deficiency. Good luck!