All Tests Were Negative, But I Can't Eat Gluten

[Kay DH]

I

[CHARBEEGOOD]

Going gluten-free is amazing. Discovering that the "test" don't support what you are experiencing is heart breaking. I wish you continued success in your search for the "healthy you". Don't stop asking, looking and talking to Doctors. If you are not being heard remember they are there to be of service to you. Go some where else. There are numerous specialist who maybe able to help you.

Good Luck

[Kay DH]

Going gluten-free is amazing. Discovering that the "test" don't support what you are experiencing is heart breaking. I wish you continued success in your search for the "healthy you". Don't stop asking, looking and talking to Doctors. If you are not being heard remember they are there to be of service to you. Go some where else. There are numerous specialist who maybe able to help you.

Good Luck

Thank you for your reply. It has been interesting going gluten-free. I'm getting better at voicing my needs at restaurants and baking breads and such (even the breads that collapse make good crumbs and stuffing). I don't think I will go through the endoscopy again, 1 week of being sick on gluten was enough. I'm a scientist and it would have been good to have a diagnosis, but it is good for me to accept my changes in life. Limitations in life can make us stronger. All the best to you.

[conniebky]

Hi. I've been sick since February - BOOM! outta nowhere I cannot tolerate gluten. Like, over night!

Tested negative for celiac. Can't eat gluten. I've just come to the conclusion, with A LOT of help from the people on this board, that if it makes me sick, I ain't gonna eat it.

The people on this board have told me time and time again, your body will give you your diagnosis. If it makes you sick, don't eat it. Period.

I've had this horrible painful rash on my elbow that went away until I ate gluten and it came back with a fever for me. Doctors can run their tests and give their advice and do their thing, but they are not sitting in our living rooms with us when things start up, so it's our bodies who REALLY know and understand what's up.

That's what I've learned from these wonderful people on this board. Your body is your best gauge and guide.

[Kay DH]

Hi. I've been sick since February - BOOM! outta nowhere I cannot tolerate gluten. Like, over night!

Tested negative for celiac. Can't eat gluten. I've just come to the conclusion, with A LOT of help from the people on this board, that if it makes me sick, I ain't gonna eat it.

The people on this board have told me time and time again, your body will give you your diagnosis. If it makes you sick, don't eat it. Period.

I've had this horrible painful rash on my elbow that went away until I ate gluten and it came back with a fever for me. Doctors can run their tests and give their advice and do their thing, but they are not sitting in our living rooms with us when things start up, so it's our bodies who REALLY know and understand what's up.

That's what I've learned from these wonderful people on this board. Your body is your best gauge and guide.

Thank you. That is great advice, and it feels good to know I'm not alone. My husband is very supportive and he and my regular doctor believe me. Funny, I'm finding restaurants and menu items that I can eat. Went out for phad thai and my husband wasn't along. He missed it so that I made some for him. I guess even those that can eat gluten miss some foods.

[momxyz]

for the most part, I will "ditto" conniebky's reply...

but I will also add that I do understand that it can be somewhat frustrating not to have an "official" diagnosis.

Initially I didn't need the validation of an official diagnosis. First it was all about making my daughter better; the benefits I obtained from being on the same diet were observable and since gluten intolerance tends to be genetic, it made sense that if she was gluten intolerant, she got it from somewhere! The most noticeable benefit for me, was a rash that had plagued me for months finally started to heal.

I was faithful for about 10 months, and then found myself in a social situation where it was really hard to refuse (a birthday cake - a surprise, made for me!) I didn't have an official diagnosis, and since I hadn't worn a skirt in about 3 years noone had seen the rash on my legs... how to explain all of this, and not come off as a health nut kook AND not offend (all within 3 seconds)...

I ate the cake.

And suffered the consequences; my rash erupted and I figure I have backtracked in that area about 4 months....

Fortunately I saw my doctor recently and she looked at the rash. I told her my opinion that it was gluten related, that it had been improving but that I had eaten cake on my birthday. She listened. And she basically said, that we don't really need a diagnosis, if the gluten free diet helps this condition (as well as other things gluten intolerance may affect), she supports the gluten-free lifestyle.

How refreshing! Although I really shouldn't have needed her validation, it does help. Next year I am going to feel lots more comfortable explaining to my friends and coworkers, that if they want to surprise me with goodies, they need to be gluten free.

[sandsurfgirl]

Going gluten free falsified your tests.

I would change docs if you can. He doesn't know what he's talking about. I was diagnosed with celiac based on positive very high blood work and I don't have malabsorption issues come up on tests.

When you do a gluten challenge by eating it before testing it's NEVER only one week. It's like 4 to 6 weeks of pure hell for those who are reacting to it.

If you feel better gluten free and gluten makes you sick then you shouldn't eat it. Gluten intolerance, celiac, the name doesn't matter. Something that makes you sick has no business in your diet.

That doctor can be added to the LONG list of ignorant fools who call themselves medical professionals.

I was talked out of even pursuing celiac testing 7 years ago because I was having trouble losing weight. I wasn't underweight, which according to the idiot moron GI doc I went to "all" celiacs are underweight. NOT true at all. Celiacs can have their metabolism slow way down and their appetite go way up to compensate for the malabsorption which is why my tests were negative on that. I was overcompensating with extra food. It's evil what these docs do to us because they are too lazy to learn something. Can you tell I'm bitter?

[lucia]

There is medical research coming out that suggests that there may be forms of gluten intolerance besides celiac. I think that this doctor Q & A (following) from the NYTimes does a pretty good job at explaining current medical thinking. The most telling line from the article, in my opinion, is this:

I hope that, with time, we will understand gluten sensitivity better. It is likely that better defined subgroups of gluten sensitivity will emerge.

The main take-away from the article is that medical research is simply not advanced enough when it comes to gluten intolerance (or, as the NYTimes doctor calls it "sensitivity") to adequately test for it. A lot of people on this board would respond to that by saying "DUH"! Nonetheless, here you have an official medical opinion on the question.

Open Original Shared Link

[Skylark]

Thank you for your reply. It has been interesting going gluten-free. I'm getting better at voicing my needs at restaurants and baking breads and such (even the breads that collapse make good crumbs and stuffing). I don't think I will go through the endoscopy again, 1 week of being sick on gluten was enough. I'm a scientist and it would have been good to have a diagnosis, but it is good for me to accept my changes in life. Limitations in life can make us stronger. All the best to you.

I'm a scientist too and I totally understand that one! I also self-diagnosed with a pretty thorough elimination diet. The physician's assistant I was stuck with in managed care was totally useless. I didn't know much about celiac, and by the time I learned enough from an actual doctor to know that the blood tests require gluten, I was four months gluten-free and not interested in torturing myself. The doctor I finally saw who knew something about celiac said "going off gluten and feeling as much better as you do is pretty much diagnostic for celiac". The only thing he was concerned about was that I was willing to follow a celiac diet if I didn't gluten challenge and get the diagnostic tests. I'm pretty gluten-sensitive so that's not a problem.

Your flu and stress story really fits in. There is a lot of research on certain cytokines being necessary to induce celiac by activating intestinal lymphocytes. Flu and stress produce high levels of cytokines. I am pretty sure I had some degree of lifelong gluten intolerance, but things got much worse after a serious A-strain flu in my 20s. I got chronic fatigue and depression for the first time, and a useless diagnosis of gastritis with the advice to stop drinking coffee for a while. If only they'd told me to stop eating bread.

There are also some very interesting articles in the literature about gliadin peptides having immunomodulatory effects outside of celiac disease. You can probably turn them up on Pubmed if you're interested.

Anyway, welcome to the gluten-free club and I'm glad you found it out faster than I did!

[Kay DH]

Thank you and the others for such great advice. It is good feeling that I am not alone. I won't bother to go to that GI again, although he was good at finding out that I had no other GI problems. I think we give medical doctors too much credit and some of them have attitudes. I think a PhD telling the GI that she is 90% sure she has Celiac was enough for him to prove me wrong. I suspect most of you are far more knowledgeable about gluten and associated immune issues than most doctors. Thank you again.

[Skylark]

Telling a doctor you have a Ph.D. in a biomedical field can be an unexpected health risk. The good news is that we have the training to sort through the medical literature and figure things out ourselves.

[frank-sk]

man, i had the same experience some years ago. i had been gluten free for a very long time and replaced bread with rib eye steaks, so there was no underweight problems. after many years of being gluten-free i developed some serious gall bladder problems which i self diagnosed.

i went to the the doctor to confirm the gall bladder problem and related my gluten story to him. he said it was impossible to have celiac since i was not underweight. some of these doctors are incredibly ignorant, not just ignorant but incapable of any sort of original thought.

then i tried to relate the gall bladder problems i was having. he said it was impossible for me to have gall bladder stasis. now, i know for a fact that gall bladder complications are very common with celiac. so i said why don't you be scientific and test my stool for the presence of bile, you won't find any because mine isn't working. he just kept repeating the phrase 'we dont do things that way'

i kept trying to explain to him the process of being logical and thorough, and if he was right they would find bile in my stool.

complete waste of time. needless to say i didn't pay the guy.

i remember in university one of my good friends was pre-med and he absolutely despised most of his classmates, now i can see why.

[Smarts]

man, i had the same experience some years ago. i had been gluten free for a very long time and replaced bread with rib eye steaks, so there was no underweight problems. after many years of being gluten-free i developed some serious gall bladder problems which i self diagnosed.

i went to the the doctor to confirm the gall bladder problem and related my gluten story to him. he said it was impossible to have celiac since i was not underweight. some of these doctors are incredibly ignorant, not just ignorant but incapable of any sort of original thought.

then i tried to relate the gall bladder problems i was having. he said it was impossible for me to have gall bladder stasis. now, i know for a fact that gall bladder complications are very common with celiac. so i said why don't you be scientific and test my stool for the presence of bile, you won't find any because mine isn't working. he just kept repeating the phrase 'we dont do things that way'

i kept trying to explain to him the process of being logical and thorough, and if he was right they would find bile in my stool.

complete waste of time. needless to say i didn't pay the guy.

i remember in university one of my good friends was pre-med and he absolutely despised most of his classmates, now i can see why.

I'm hearing you all and gee I am feeling so mad after being told this week I am not predisposed to celiacs as I only have one positive gene and there is absolutely no chance that I have a food intolerance to anything, despite him finding villous atrophy. 4 years ago I was desperate to shed some kilos (I was hypermanic with Bipolar II then too) so I cut out lots of food from my diet limiting it to meat/ fish and veggies. I loved the diet because I dropped so much weight and most GERD symptoms cleared up. Slowly carbs crept back in my diet and so did the GERD, but I still tended to avoid bread, pasta, cakes - maybe only eating them a couple of times a week. When my GI ran a blood panel on me last year, he didn't advise me to prep. I didn't even know exactly what he was testing me for. In this test he discovered my iron levels were through the floor, but that I was negative to a gluten intolerance. Did he think to check how much gluten was actually in my diet? No - and neither was I asked to increase my intake of gluten before the test. I believe when he said I have no chance of having any food intolerance he is basing it on that test. I thought this doctor knew his stuff!!

[Jordan E]

My tests are being processed right now. I am a self diagnosed Celiac, and I hope the tests back me up.

I'm a 22 year old male, in otherwise impeccable health.

When I turned 18, I started to get a rash on my chest. It slowly developed across my back, and is now totally covering my whole back.

At age 20, I saw 6 different Dermatologists, including several "experts" at the Huntsman Cancer Institute at the University of Utah. For a long time, we thought this might be CANCER! I was so scared, and even more frustrated when they told me that it wasn't cancer, bacteria, virus, parasite, fungus or anything! Dermatitis. Really? That's the best you got? They gave me a steroid cream that took the inflammation out for a day or two, and it was right back soon after.

Recently, within the last few months, I started to correlate my eating habits with several other seemingly unrelated symptoms. I noticed that I was getting regular vision loss. A vision expert would tell me it was "Occular Opthalmic Migraines" when my right eye would simply turn off. I have had chronic diarrhea for years, stomach pain, serious anxiety and depression, mood swings, tingling in my hands, feet and lips, and many other funky things going on in my body. I had no idea what was going on.

I decided to go off Gluten for a week, and I was astounded at how amazing I felt! I slipped up and ate some spaghetti one day for lunch and was done for the rest of the day. I felt terrible. I decided that a doctor's visit was necessary. In an effort to maintain normalcy for the blood tests, I have eaten a moderate amount of gluten in the days prior.

My friend's grandpa just got diagnosed with Celiac's at the same time as he got diagnosed with Bowel Cancer. Even though there aren't any external symptoms, the internal reaction to the gluten is always going on when you eat Gluten. His tests have come back negative for 40 years, they are not 100% reliable, and you know your body better than anyone. Do what makes you feel good.

[nora-n]

I have searched through pubmed.com, and have not found any reference about gluten challenge that involved a shorter time to a positive biopsy than six weeks.

( some new methods, one involves a three day gluten challenge and then looking for freshly activated T cells, only done in research, and another thing done in research, this one: Open Original Shared Link and some other patient have had biopsy samples incubated with gluten but without challenge.)

You know in the old days they used to put children back on gluten and do another biopsy, and then off gluten and do another biopsy...they ahve stopped doing that now after they got some good blood tests for celiac but then they just could not know if gluten caused the gut issues.

But anyway, they got experience with how long it took back on gluten, and it varied. From six weeks to 72 weeks or something. Maybe I should look i t up again.

And, three slices is often way too little, I worked it out to six to eight.

The last I heard they increased the recommendation from 0,3 grams per kg a day to 0,5 grams per kg per day. That is a lot.

And, three months back on gluten is better than just six weeks which is just the minimum time observed.