Need Help On Possible Celiac Disease

[brianjh]

Hello. I just joined this forum and wanted to ask some questions. For most of my life I have had problems with fatigue, joint pain,anxiety,insomia and some stomach problems. I have had a lots of tests done through doctors and through ordering through direct companies. My local doctors have mostly written me off and i don't plan on seeing them anytime soon.

Recently I had some blood tests done to rule out celiac disease. I think they were iga gliadin,igg gliadin,endomysial and reticulin. Three were negative but the IGg anti gliadin came back at the bottom of the equivocal range. It was 11. Normal<11 . Equivocal 11-17 . I had been on a gluten free diet for 16 days and off for about eight days before the tests. The person at the company brushed off the one equivocal test saying "you dont want that" although they were not a doctor.

That company gave me a lot of problems and I dont want to order any more tests from them . I would rather not go to my local doctor and beg for tests. The last time i saw him he started talking about adhd. I would rather not have the intestinal biopsy done now any way. It seems invasive and I have already spent so much money on doctors and tests.

As far as symptoms go I do have some bloating in my lower somach and some diarrea. But those things dont compare to my other troubles of fatigue, joint pain,exercise intolerance,insomnia,very poor concentration,ocd and other psychiatric problems with no help from meds,bad temper,reclusive habits. Some of my problems seem to resemble a form of autism. I once had several blood tests which seemed to show sarcoidosis but my lungs were clear. I once had a spect scan which showed global hypoperfusion (reduced blood flow in the brain) but the doctor could not explain why.

Is it possible that one equivocal test could be a sign of celiac? Has anyone with a result like this responded to the diet?

I'm thinking off trying the diet for six months to see if gluten could be part of my problems. When i was on the diet for 16 days my stomach may have felt better but my other problems were not solved. In the past I may have been gluten free for a month because of other diets and still was not well.

Would it be worth trying the diet for six months ? Has anyone seen dramatic results in these symptoms past a month or so on the diet?

Sorry about the long rambling post. I dont think I can go any further with testing. The diet is not easy but i am not doing well the way I am. If anyone has any experiences or information relating to my situation i would appreciate them. You could answer here or e-mail me at kdxv45@yahoo. com

Thanks,

Brian

[brianjh]

sorry my correct e-mail is kdx80v45@yahoo.com

brian

[Guest Robbin]

Hi Brian and welcome. Sounds like you have had experiences like so many of us here with all the drs. and tests. This is just my suggestion, but I would try going gluten-free for more than a couple of months to make a judgement. I immediately felt better with the D and gas, but it has taken me about three months now to start to come out of the "brain fog" and the joint pain is somewhat lessening. I have fibromyalgia, too and casein intolerance (just found that one out last month). Your symptoms sure sound like celiac and maybe fibromyalgia (have you been checked for that?) I had a good month of feeling worse with hot flushing, tiredness and aches before I felt better. There is a definite "withdrawal" from gluten and it varies from person to person on how long it takes. It depends, too, on how strict you are. Be extra careful with checking labels and eating out is not a good idea until you get the hang of it and know what is safe to eat. I highly recommend keeping a food journal and listing all your foods you are eating, including all ingredients in things like cornbread, drinks, etc. in case you are having problems with other foods besides gluten. You may have to cut out dairy for awhile, as a lot of people are lactose intolerant because of intestinal upset. Most people can have dairy after healing. Some have casein intolerances, soy, eggs, nightshade vegetables. I hope you feel better soon and keep us posted.

[Rusla]

Hi Brian--welcome to the group. This is a great place for support and to learn a lot of things. I would definitely say go gluten-free but you need to be completely gluten free. That means no oats, rye, wheat, barley, spelt, kamut in anything and that includes shampoos, conditioners, hair gels, lotions etc. You need to be very diligent with these things and watching for what does have hidden gluten in them. Soy sauce is one such item, yet you can find gluten-free Tamari soy sauce, You will need to be at least gluten-free a couple of months if not longer . Although many people see differences almost immediately, everyone is different.

I can so understand you reluctance to go back and fight the doctors. Many of us here had done an uphill battle for 25 even 30 years and continue to have the battle. However, if we can help one person on here not to suffer as much as we have then we consider it successful. Going gluten-free you have nothing to lose and much to gain.

[Guest nini]

I agree, go ahead and go gluten-free and give it a good six months. You should be able to notice a substantial improvement by that point, but don't expect all your symptoms to be gone by then. On average it takes at least 2 years for most healing to take place and even after that, most of us have gone so long without a dx that we have other issues that don't necessarily go away by being gluten-free. Like fibromyalgia... I have noticed my fm pain is much less than it was before going gluten-free, and I don't need to take nearly as many of the meds for it as I used to, but it's still there. In the beginning stick with foods that are naturally gluten-free like fresh fruits and vegetables, (stick with the mild ones and cooked veggies at first) and clean meats like baked chicken and fish, lean beef and pork... some people have additional problems with antibiotics and hormones in most commercial meats so try the organic hormone and antibiotic free meats in the beginning... I find those taste better anyway! Def. keep a food log and keep track of any symptoms that seem to pop up after meals...

[nettiebeads]

Hello. I just joined this forum and wanted to ask some questions. For most of my life I have had problems with fatigue, joint pain,anxiety,insomia and some stomach problems. I have had a lots of tests done through doctors and through ordering through direct companies.

Sounds like Celiac could be the culprit. There are lots of false negatives for celiac tests, Blood or Endo. My gp thinks that probably the tests themselves are faulty- not sensitive or specific enough for realiable accuracy. Remember, the medical community doesn't know everything, and celiac is one of the least understood diseases. You should read the posts by Radman - he's an oncologist and celiac was discussed but briefly in his classes. And I tried to explain my gluten-free diet to an internist I was seeing at one time and she thought it would be okay for me to eat bread! Anyhow, I was dx'd through the diet challenge alone 9 years ago. That was good enough for my then gp (he's since retired) and no other drs have dismissed his dx. I know what gluten does to my body and that's what I go by. You can try the gluten-free diet without a dr's permission or guidelines. If you feel better, great! It doesn't matter if it's celiac, gluten intolerance or sensitivity - the treatment is the same - the gluten-free diet. If you want, you could get a gene test, but then again, there may be more genes connected to celiac and gluten problems than what is currently known. It's your body, you're the one who controls how good it feels or not. Good luck, and keep us posted! We love to help!

Annette

[jenvan]

Brian--

I saw you were eating gluten for about a week before your tests again. Its hard to say how different your results would have been if you had not been gluten-free previously...however, going gluten-free for any period of time before getting tested can skew the results.

"When i was on the diet for 16 days my stomach may have felt better but my other problems were not solved"

I also want to note that some symptoms and issues related to Celiac (or not) can take a long period of time to improve or disappear...and unfortunately, some symptoms persist for some even after being gluten-free long term. Some still experience joint and muscle pains, for instance, even after having been gluten-free for years. It is good to know this...that not all symptoms can be used as a gauge to measure improvement on a gluten-free diet. However, don't let that discourage you as many do experience great and immediate improvement. Either way 16 days is not long at all to be on the gluten-free diet... You need to allow yourself more time to see if you improve.

Also, if you think you have or have similarites to autism, you may want to try a gluten-free/cf diet (no dairy either). This diet has improved symptoms for some folks with autism and ADHD issues. I can connect you with more information on this if you like.

PS--I also recommend keeping a food/symptom journal and rotating your diet. This is a great way to check for foods that are culprits. Some of the most common ones for people are gluten, dairy, eggs, nuts, soy, corn, rice, certain sugars... And remember as Rusla said, gluten-free means no gluten in medications and products as well as food.