Flare ups

[pdm1981]

I've been on a strict gluten-free diet now for years since I was given the diagnosis of celiac disease. This was a diagnosis I questioned from the start. My blood tests came back positive, the highest numbers the GI doctor had ever seen. He told me that I had to go on a gluten-free diet and get a biopsy. I did just that in that order. Come to find out that I should've waited to go on the diet til after I had the scope. Anyway, the scope just showed an inflamed gut but I was still given the diagnosis of celiac disease despite the botched scope. I've been gluten-free now for over 4 years now and still have issues. I call them flare ups at this point and I wonder if I even have celiac disease at all. I know I haven't strayed from my diet and many of the foods I eat I research and ask around about before trying. But every now and then I get this pain that is right around my sternum and goes straight through to my back, almost can be described as a charlie horse. This is followed by lots of gas and bloating, anxiety, and joint pain. This can last up to several days and is very miserable to deal with. Thats without eating any new foods or putting myself in any CC situations. The other day I came across something called adrenal fatigue. I don't have the first clue where to take this but it has all the same symptoms as celiac disease except for the blood result. I actually had one of my adrenal glands removed about 15 years ago too due to a tumor. I wonder if this could be it and the celiac disease was stumbled across. The GI I was seeing is useless. He doesn't want to retest anything. I really screwed up by going to the VA for a second opinion because their answer was to just go off the gluten-free diet, thats why I was feeling sick still (that's your tax money hard at work). Why in the hell would a gluten-free diet make anyone sick? What an idiot. Any thoughts on what these "flare ups" could be?

[Ennis-TX]

Secondary issues? It is not uncommon, Ulcerative Colitis, SIBO, Candida, are common ones, and the standard processed gluten free diet can make sibo and candida issues worse, and the carbs, starches, sugars in processed foods cause them to go out of control.
Ulcerative Colitis can flare to not just gluten, every one is a bit different with it, but common ones are dairy, soy, gluten, caffeine, and in some rare cases like mine fructose, and glucose.  My UC can flare up to some really odd things also like stress or exercise.
IT could of course be something more serious like IBS or crohns.

[cyclinglady]

First, I think you need to determine if you flare ups are due to active celiac disease.  When was the last time you had your antibodies retested?  Here is information on follow-up care:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Then look to your diet.   I know you may think you are gluten free, but research has shown that many non-responsive or suspected refractory patients have been getting gluten into their diets despite their best efforts:

http://www.mdpi.com/2072-6643/9/10/1129/pdf

You have posted over the last month or so of trialing  “gluten free” delivery meals from various companies.  Like eating at restaurants, you are still placing trust in people who may or not really be gluten free savvy.  I would trial the Fasano diet and not eat out for three months and see how you feel and what is does to your antibodies follow-up testing.

If celiac disease is firmly ruled out, then Ennis has offered excellent advice.  You might be developing other illnesses.  I know I struggled last year.  I did the Fasano diet without success.  I had a repeat endoscopy which showed healed villi, but chronic autoimmune gastritis.  Good to know that I am dietary compliant, but disheartening to have another AI issue.  

I do not think you should doubt your initial diagnosis when your complete panel was off the charts despite a botched endoscopy.  

[pdm1981]

Well I had the whole work up this week. Scopes on both ends appear to be normal but many biopsies were done and they're not going to be in for about a week. There were a couple of ulcers but that's it for the most part. They took a lot of blood and also are running the genetic test for celiac disease. One of the tests for celiac disease, not sure which one or the name, did come back negitive but was told not to rush to any judgements until everything comes back. Two GI doctors told be if the biopsies were normal and the genetic tests came back negative, there was little chance that I actually have celiac disease and may just be gluten intolerant. They also said there is a form that is aquired but highly doubt it in my case. They did every test imaginable. By the end of next week I should have some actual answers instead of assumptions. I'm unbelievably anxious to find out. Could you imagine what life would be like without celiac disease? 

[Alis]

Our stories are very similar. My flare ups started two years ago and I have had 5 of them over this time course. It always starts in my chest along my sternum and then develops into joint and muscle pain that lasts for weeks. I am being followed up on next week for celiac disease. But I feel the same way as you- that it’s something else but the doctors have not been able to figure it out. 
 

Hope you find the answers you are looking for! 

[Scott Adams]

Hi @Alis and welcome to the forum! If you’re being tested for celiac disease next week be sure that you’ve been eating gluten daily for several weeks beforehand or the tests might be false negative. Here is some more info: