Gluten-intolerance Despite Test Results?

[susanmarie]

Just a quick background since I am new to this forum. My name is Sue and I have been diagnosed with systemic lupus, sjogren's syndrome, fibromyalgia and chronic fatigue immune dysfunction syndrome. I've also been told that I suffer from dysphoria and some acid reflux.

I started to see my GI doc bc I was frequently finding blood in my stool. I was also having frequent bouts of diarrhea and vomiting (though the vomiting is fairly rare now). Everytime I would eat, especially first thing in the morning, I would almost instantly have to go the bathroom. My stools are almost always floaters (lovely I know...but I'm sure you all can understand).

I also suffer from severe headaches (usually daily) and severe fatigue. Granted, a lot of my symptoms could be related to my other conditions but I can't help but feel that a lot of problems could be relieved by going gluten-free.

When I was a child, I also tested positive for a wheat allergy--I still believe this is related.

Anyway, I've gone through all kinds of testing. Most resently I had a colonoscopy/endoscopy and it was inconclusive. The celiac biopsies didn't show any signs of damage to the villi in any of the locations. The only thing that showed up was a polyp that was precancerous (did I mention I'm only 22??) and some inflammation. My IBD panels came back negative along with all other bloodwork that screens for celiac apparently. The only thing I don't think I was tested for were the genetic markers.

At this point, my doctor has ordered me to do a small bowel follow through which I have scheduled for next week. He doesn't seem to be terribly concerned about any of this but I can surely tell you that when I suffer from abdomen pain/vomiting/diarrhea, I get very concerned. It always becomes severe and nothing (including the protonix I'm on) has helped alleviate any of that.

I apologize for this being so long-winded but I need some honest opinions from you all. Does any of this ring true with gluten-intolerance? My doctor seems convinced I'm not a celiac but there is a part of me that really feels strongly that gluten is a source of my many problems. Should I suggest getting tested for the genetic markers? I'm just not sure what to do at this point in the game.

Thanks to everyone that took the time to read through my ramblings

Sue

[AndreaB]

Sue,

It certainly sounds like you have gluten intolerance. All the diseases you listed tie back to gluten. Doesn't mean gluten necessarily causes it, but is exacerbates it. I would definately suggest gene testing. I would go through enterolab for that as they also recognize gluten sensitive genes (as well as celiac genes). The whole panel for them is $369 and includes gene testing, ttg, IgA and malabsorption. They may offer gene testing separately but I'm not sure....I got the whole thing. The whole panel also includes dairy. Open Original Shared Link if you want to check them out.

You don't have to have a doctors approval for a gluten free diet. A person's diet is their own choice. I don't know how much you have to pay out of pocket for all these tests but enterolab would answer your questions.

I would also recommend reading Dangerous Grains. It's about 4 years old now and some things have undoubtably changes but it does reference the diseases associated with gluten. It also goes through the silent celiac etc. It sounds like you have all the symptoms of celiac/gluten intolerance except for the villi which is hit and miss as it is.

[CarlaB]

Enterolab is a good idea. I would also give the gluten-free diet a try. The conventional tests can give a false negative. You will learn a lot with dietary response!

I am reading a book called Tired of Being Tired. I am getting sooo much out of it. I think you would, too. It's all about adjusting your life and everything that's a part of it including diet to be a healthier person. It talks about how we go down a path today that leads us to stress and illness. It's written by a doctor, and she talks about those of us who know we're sick and get test after test that says we're healthy, which perfectly describes me!! Sounds like it describes you, too.

[Guest jhmom]

Hi Sue,

Boy does your story sound similiar to mine. To make my VERY long story short I started having problems in 2002, lost 40lbs in 2 months and every procedure / test known to man including celiac blood tests. All tests / biopsies / labs were normal, except one Endoscopy showed patcy inflammation but it wasn't enough for my GI doc to DX Celiac. Blood test and biopsies are not 100% accurate, the way my doctor explained it takes time for a disease to show up in your labs. Then of course with the biopsy it will only be accurate if they get the "exact" spot of the damage (which they cannot see with the naked eye) so it's sorta a hit or miss situation.

After more than a year of this I decided to get tested thru Enterolab. My tests came back positive and I began a gluten free diet right away. I felt better but not 100%, after a few more months and researching the symptoms I continued to have I found out about Lupus. After another 1 1/2 years and 3 rheumy's I was dx with Lupus (May 05) and was told it attacks my GI tract. My rheumy started me on Imuran and I immediately could tell a difference, I didn't have diarrhea anymore! After having it every single day for 3 years it was FINALLY gone!!!! Currently I am having new GI problems and about to have more tests run, it could be lupus causing the problems we just need to figure it out.

I hope your GI can find your problem. If your tests dont reveal anything maybe try speaking to your rheumy about the possibilites of lupus attacking your GI tract. In the meantime you could also try the gluten free diet for a couple of weeks. Trust me, if you are gluten sensitive you will know it right away. Some people like to see the positive results from their labs but an improvement on the gluten-free diet is the best test out there and it doesn't cost anything ! I do hope you feel better soon, feel free to ask me any questions you may have.

[nikki182]

Sue,

I think you should give the gluten free diet a try. It's more conclusive than any of the tests. I put myself on the diet recently and I feel so much better. My doctors wouldn't even consider celiac as an option, and I ended up calling prometheus and ordering the blood tests myself. Even with immense improvement on the diet my doctors still won't admit that there is even a possibility of celiac. I've had doctors tell me I have chronic fatigue syndrome, fybromyalgia, lupus, and others that I can't do anything about. Another doctor is convinced I have MS despite normal MRI because I had so much numbness and tingling in my arms and legs. This has completely gone away now that I am on the gluten free diet BTW. They call it coincidence. I call it celiac. I spent years being depressed, thinking I would never feel better because I was listening to what my doctors told me. I'm your age, and I spent alot of time thinking how unfair it was that I couldn't get out of bed and all my friends were enjoying the best years of their lives. All I know is that I feel better than I have in years by being on the gluten-free diet, and that's good enough for me.

If you try the diet you might feel a lot better. Your symptoms sound like they could easily be gluten related. And hey, what do you have to lose?

If I've learned anything, it's that nobody (even the doctors who get paid for it) is going to care about your health as much as you. I'd go with your gut instinct (hehe, so celiac appropriate) if you think gluten is behind some of your problems...

Good luck with everything! Everyone here is really helpful (I'm pretty new to this and have had a lot of my questions answered), so you've come to the right place.

[jcc]

Hi Sue,

When your doctors are done running all the tests, and if they conclude you don't have celiac disease.... I hope you will begin a gluten diet for at least six months. Hopefully you might see results much sooner than that.

Please check out Open Original Shared Link. Don't miss the pages on diagnostic testing, other autoimmune disease, fibromyalgia and chronic fatigue syndrome, GERD, and anything else that might interest you.

I've met someone who reversed their Sjogren's symptoms including the antibodies through dietary changes! Her doctor was impressed, and has started suggesting other patients try it (like casein, soy, corn, yeast, etc).

Start with removing gluten, but please consider other foods might be problematic as well.

Good luck!

Cara

[Nantzie]

I had negative test results for celiac, but went gluten-free anyway just to see if it helped. Thank God I did. My life completely changed. Read my sig line for more.

Nancy

[Generic]

My biopsy was "inconclusive". that was 18 years ago. The dr. suggested I try the diet anyway and see what happens. I definately have celiac disease. When I get glutened accidently I definately know. Try going gluten free to prove it to yourself, see if you feel better. You could also do the gluten challenge?

[nannyb]

I would always recommend that someone with your symptoms try the gluten-free diet for a while. Besides some added expense what do you have to lose?

My GI is convinced that there is no way I am celiac even though I feel 1000% better gluten-free. He did admit that if I felt better it wouldn't hurt to stay on the diet. Idiot, like I would ever do anything else.

My biopsies were all negative and they didn't even do the blood test because of my Crohn's/Colitis stuff they said the test would be unreliable. I know many people who are living much happier healthier lives without a doctor's diagnosis.

Listen to your body if you are celiac/gluten-intolerant removing gluten can change your life. Many of the minor aches pains, brain fog, memory problems as well as my carpel tunnel stuff disappeared when I went gluten free. I had just wanted to get rid of the IBS so boy was I surprised at what else disappeared as well. It all comes back in varying degrees when I accidentally get glutenned so I know they are connected and not just a coincidence.