Negative/inconclusive Test Result... Gluten Challenge?

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I forewarn all readers this this will be a long post, with that being said...

I'm 22 years old and on a gluten free diet, but since the age of 16 I have been plagued with all sorts of digestion upset. Since the age of about 10 I knew I had some degree of lactose intolerance, so I've been drinking soy milk since then. The more "liquid" the dairy is, the worse my symptoms are. I can tolerate hard cheeses pretty well. My symptoms gradually got worse over the years, to the point where I couldn't eat anything without having diarrhea. I knew this couldn't be related to the lactose intolerance. It didn't matter what I ate, fruits, veggies, poultry, meats, grains... anything I ate would come out mostly undigested. I was having diarrhea up to 16 times a day. The only way I could curb this was by taking 2-3 immodiums everyday. I did this for 5 and 1/2 years (until last November when I went gluten free and my symptoms seemed to vanish).

I went through a number of different tests/blood work when I was 18 with a GI specialist including a colonoscopy, endoscopy, upper/lower gi scan (I drank Barium and they watched it go though my system), a gastric emptying test (ate radioactive eggs and they watched that go though my system), swallowed a camera to take pictures of my inner workings, stool sample, and I was tested for Chron's, IBS, and Celiac (twice). My doctor told me that the first result for Celiac was inconclusive so he wanted to test me again. The second result was negative. He didn't tell me what exactly he tested for, or show me any of the results. He also found polyps in my colon and told me I had a hiatal hernia, but didn't explain what that meant. He diagnosed me with IBS, told me to go on a low fat diet, and come back every two years to check for polyps (I haven't since then, but I have one scheduled for the summer). Did the low fat diet, without any relief of symptoms. Family history was not taken into account since I am adopted from Colombia and don't know anything about my birth family.

Aside from the GI symptoms, I was constantly tired, no matter how much sleep I got or coffee I drank. I had pain and stiffness in my joints. I've have knee surgery on both knees, the first one when I was 14 and the second on when I was 21 for torn meniscus. On the first surgery the doctor told me he saw the beginning signs of rheumatoid arthritis. I have carpal tunnel in my right hand (which has gotten much better since going gluten-free) and problems with my left shoulder. It pops and clicks often, and I wake up with pain every morning. Doctor said possible torn rotators cuff and instructed me to go to physical therapy. I had trouble concentrating on anything, couldn't seem to focus much for any amount of time. I was also almost always seemingly hungry, and was always somewhat over weight until about the age of 17.

I also have to note that between the ages of 17 and 20 I suffered from Bulimia, and I know that engaging in this activity probably didn't help any of my symptoms, however all symptoms started before and continued after I received treatment for my eating disorder. I have not engaged in any bulimic behaviors since the age of 20.

So in November of last year I was fed of with feeling miserable every day. I did much research on the web and talked to a few good friends who have lots of knowledge on nutrition, and came to the conclusion that I should try a gluten free diet. And what do you know, after a week symptoms were virtually gone. After 14 days of being gluten-free, I decided to test it (elimination diet) by eating something with gluten, a bagel. I immediately got a head ache followed by severe body aches. I was sick for 12 days afterwards with 1-2 days of each of these: diarrhea, vomiting, swollen tonsils, body aches, and joint pain. I was finally able to get out of bed on the 9th day to see my good old family doctor who said "Sounds to me like a gluten intolerance". Though I'm not exactly sure that was a diagnosis.

I wanted to know if anyone here has done a gluten challenge, basically reintroducing gluten back into your diet to have a Celiac test done? I've been strongly considering this for my own piece of mind, as I have no family history, should I choose to have children some day, I want to have a solid answer as to weather I have it or not. I also want to know really how careful I should be with cross contamination if I continue to be gluten free for years to come, how much worse will my reaction be 10 years down the line to the bagel incident? Also should I choose to do this, I really feel like I should tell my doctor what to test for, as he put me through several tests and couldn't find an answer... so what are the proper tests for this? I have read that symptoms of gluten contamination for Celiac diseased people can include seizures. Can I be susceptible to this if I do really have Celiac rather than just a gluten intolerance? I am not in a completely gluten free house hold right now. My fiance does eat a lot gluten-free but not completely and I realized some of my symptoms are occasionally coming back, possibly because we use the same appliances? We try to keep everything separate, and cook my food first, but I'm sure we can't ensure all my food is cross contamination free.

I apologize for the long post and I thank everyone who has taken the time to read it. It has been so frustration over the past seven months (there have been a few nights where I sat and cried a fit like a three year old because I couldn't walk into a pizzeria and "grab a slice"). Any insight would be much appreciated.

- Mel

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Hello Mel! This looks like my exact life story. I personally went gluten free when I was 18 (now 23) and for months I felt like a new person. I went back to gluten because my tests were negative. One year later I had horrible pains and had to go to the hospital then week by week I became sicker to where I could not leave my house for three months. In all honest I am currently 3 weeks free again, and my doctors want me to eat gluten for 2 weeks for the testing again now that its back. Personally if gluten is helping, stick to it. I refused the test because 2 weeks of gluten in your system restarts the cycle and can take a full extra month or even 2 to leave the system and heal.

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Welcome to the board, melbatoast. I really think you already have your answer, but are not yet willing to acknowledge it.

In the first place not everyone who is intolerant to gluten has celiac disease. The non-celiac gluten intolerants appear to outnumber the celiacs by about six to one. In the second place, not everyone who has celiac disease tests positive on the tests - there is about a 20% error rate for both blood tests and endoscopy. Some people test negative for one and positive for the other, some negative on both. There is presently no medical test for gluten intolerance although researchers are working on it.

So where does that leave you?? Without a diagnosis (although your "good ole doc" said he believed you were gluten intolerant) and unable to eat gluten. There are many of us in this club for one reason or another. Went gluten free before testing. Tested negative. Were told they were negative when in fact their tests were mildly positive. You said you had one test that was "inconclusive". Which probably means that it fell in the borderline category - not negative, but not strongly positive. Why should this test be less accurate than the one that was negative??

Yes, most of us who are gluten intolerant react more strongly to it after a period of gluten free eating. While what I am going to say is not the medical explanation (which talks about mast cells and stuff most of us don't really understand unless we are of a scientific bent), my interpretation is that your body is so relieved at not having to deal with that horrid gluten any more and that it can send its guards off duty, that when gluten reappears it mounts an all-out, outraged attack by an elite corps to help you get the message. In fact the official medical explanation does say that it musters different cells to attack the gluten. So most people cannot tolerate the torture of a gluten challenge for testing, which requires you to eat the equivalent of 3-4 slices of bread for two to three months for a valid result if you have been gluten free. The kind of challenge you have done, a one-shot trial with such a violent result, surely proves the case that you should not eat gluten.

It sounds like you have had a thorough medical work-up which has failed to come up with the diagnosis. About the only testing left for you at this point is the genetic testing, which tests for the two main celiac genes. Possession alone of one or both of these genes does not mean that you have or will get celiac disease, but it does predispose you to the disease. It generally requires a trigger, a physical or emotional trauma, to activate it.

Does it really matter if you know if it is celiac disease or not? You will know if you have children who exhibit symptoms to get them tested right away - which you would do with the diagnosis too - so that really is not an issue. And you should worry about cross-contamination the same as if you had celiac disease because it affects the intolerants as well as the celiacs, as you apparently are discovering (from your second-to-last paragraph).

As far as the seizure issue is concerned, it is my belief that you would not run this risk from an occasional exposure to cross-contamination. You would run the risk of developing seizures by continuing to eat gluten if you were in fact celiac, as my brother did (he was never diagnosed celiac (or gluten intolerant) and his seizures were not controlled by medication -- he continued to eat gluten.

You sound like you know you should remain gluten free but are going through the stages of gluten loss -- denial, mourning, etc., and this is a natural feeling - it is not an easy change to make, but it is certainly worth it for your health and peace of mind. If and when you decide to make the change permanent you will find lots of helpful information on the board about controlling cross-contamination, deglutening your kitchen, what to keep separate and not share with gluten-eaters, etc. And we are here to help :) Here's to good health.

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Great response shroomie!!'

The only thing I have to add is to get all of your old medical records, find your Celiac tests and see what exactly was done and what the results were, you may have an answer in there somewhere already.

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Why would you want to make yourself so ill again, if you've had such good results with a gluten free diet ?

From what you have written, you already have been thoroughly tested by a GI doctor, and the best he could come up with is "inconclusive," then "negative." You have the best almost- diagnosis from the family doctor who said "gluten intolerance." You have proved by diet trial challenge that you react to gluten. You must trust yourself.

This is as good as it is going to get at the present time for some of us. If you are a sensitive person, after a period of time on the gluten free diet, varying from weeks to years, after a few accidental glutenings, the thought of deliberately ingesting gluten becomes abhorrent. That is when you will know that you really are gluten intolerant, and some of us will really be the "celiacs without the diagnosis," it doesn't matter, (except to a researcher) we just need to avoid eating gluten. Because it makes us sick !

If some of your symptoms are coming back, try to work on the home cross contamination "issues." Medicine cannot give you another magical diagnosis of something different, which is going to change you into someone able eat gluten again. (at the present time.)

Some of us do not do too well with soy products long term, and therefore you might be more comfortable experimenting with a different sort of gluten free, non dairy milk drink.

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Welcome to the board, melbatoast. I really think you already have your answer, but are not yet willing to acknowledge it.

Mushroom, you're right. I guess part of me thinks that the bagel incident was some sort of huge coincidence, but the other part of me knows I'm completely out of my mind for thinking that. I guess I'm just concerned if a few years down the line new research or insight is available that concerns Celiac's but not gluten/intolerant or sensitive people. Or if I'm really allergic to it rather than intolerant. There have been a few times before I was gluten free that after eating something, the palms of my hands were itchy, but no hives or other symptoms. From my understanding an allergic reaction doesn't always have to manifest with hives and itchiness, but can include fever, upset stomach, vomiting, etc. I've had anaphylactic shock twice, but this was a reaction to allergy shots. Both times I believe the dose was increased too quickly, and both times I had to be rushed to the hospital. I noticed a few times since going gluten free severe itchiness/hives under my arms, and occasionally on my temples (usually right after a shower which could have been the shampoo), but not a full on allergic attack.

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Great response shroomie!!'

The only thing I have to add is to get all of your old medical records, find your Celiac tests and see what exactly was done and what the results were, you may have an answer in there somewhere already.

Thanks for the tip, I will. I think it's strange that he never actually showed me the results, however I trusted him... he's the doctor right? :)

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    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
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    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
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