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Can Gluten Intolerance Cause Severe Symptoms?

beebs

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beebs Enthusiast
beebs
Posted

I am still on my never ending quest to find out what is wrong with me. I know I react badly to gluten and I am pretty certain its celiac. I have been diagnosed severe gluten intolerance due to going gluten free before biopsy - A little background is;

My mother is Celiac and my sons biopsy was borderline.

I tested negative on the genes test and negative on the blood panel.

I have unusual symtoms that include, GERD, Reoccurent stomach ulcers, large aount weight loss, tonnes of autoimmune connective tissue stuff, arthritis, mouth and nose ulcers, body temp issues, fatigue etc

I had three episodes of what my GI suspects is transient intussusception in 18 months. Each time I really thought I was going to die.

I went gluten free whilst I was pregnant thinking I was going to do a gluten challenge at a later date, after 6 weeks of being gluten free I went out and ate at a restaurant - and I ate heaps of gluten. Within half and hour the suspected intussusception was back, I was violently ill and in agony and ended up in hospital.

I have now been gluten free since January - and no more agonising gut pain etc, the problem is that it looks like I may also have one or more connective tissue diseases. A celiac diagnosis isn't the be all and end all - but it really would help in terms of all my autoimmune symptoms and trying to get my ducks in a row so to speak - figure out which symptoms is which disease.

My GI wants me to do a gluten challenge - but Intussusception can be fatal - I think this is pretty scary to be honest - so I was just wondering - can gluten intolerance cause something as severe as intussusception? If not then I think I pretty much have my answer...

Thanks in advance.

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Skylark Collaborator
Skylark
Posted

Don't let your GI push you into the fallacy of needing a specific label for whether or not you're celiac. Gluten intolerance and celiac are in the same spectrum of genetic gluten intolerance, both can make you very sick, and both require you to be on a gluten-free diet. If gluten gives you symptoms of intussusception it doesn't matter whether or not you're celiac - You simply can't eat gluten. Period. Maybe you're celiac; maybe the gluten is simply causing more intestinal inflammation than your body can handle on top of connective tissue disease. You won't know until tests are developed for gluten-free celiacs. You need to tell your GI to rediscover his apparently lost common sense and that there is no way you're risking intussusception in order to confirm what you already know - you can't eat gluten - with a test.

The celiac diagnosis is not essential to figuring out the connective tissue disorder. You stay strictly gluten-free, and whatever symptoms are left after a year or two is from your connective tissue disease. You would not be able to sort them out any other way with a firm celiac diagnosis anyway. Celiac can do too many different things to be sure which symptoms are which (or if they're intertwined).

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ravenwoodglass Mentor
ravenwoodglass
Posted

Please don't let a doctor talk you into something that you know is going to hurt you. For one thing there is always the possibility that your negative blood tests were a false negative and gene tests can not firmly rule celiac in or out as there are more celiac associated genes found every day.

If you have diagnosed celiacs in your family chances are you are also. In my family the most seriously ill person, myself, showed negative over and over again on testing. My other family members, some of whom had very few symptoms, all came back positive on blood work. I was finally doctor diagnosed but it took a very long time and I became ill enough for it to take me years to recover and I was so damaged before that I have some issues that are permanent.

The diet is not going to effect testing for other issues so do stay gluten free. The doctors curiosity could have some very severe results and you don't need his permission to be gluten free.

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I agree with the others. Don't let the dr talk you into a gluten challenge just to get a label. What would you gain from an "official" diagnosis? Some people in the US have even avoided getting diagnosed because they don't want to risk losing insurance. There's no upside as far as extra treatments or medication if you get diagnosed with celiac--since the treatment is a strict gluten-free diet. At most you might get a dr to do some extra vitamin panels or a consult with a nutrionist. FWIW I had never heard of "Intussusception" so I looked it up and it matches my GI symptoms exactly now when I get a large amount of gluten by accident (esp the blood and extreme pain part which has very nearly sent me to the ER). My doctor was incredulous that this could be caused by gluten and tested me for crones, colitis and bunch of other things (this was after a year gluten-free). But I only have those sympotms if I get glutened so she ended up just saying that I was "healthy" and to keep eating the way I'm eating if it keeps me from having those symptoms.

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IrishHeart Veteran
IrishHeart
Posted

Yes! Gluten intolerance causes severe symptoms!

I am chiming in and agreeing with Skylark, Raven and GFmanna---you do not need to put yourself through agonizing pain for a "firm" diagnosis. I had the same excruciating pain from gluten and wouldn't do it again for any further testing either. In fact, my PC doctor said..."why should we?---tests are often wrong and you have had enough pain." If I had listened to the GI doctor's advice--that it wasn't a "gluten issue"--I might be in a wheelchair, mental health ward, or dead by now. (Blood testing was NEG for me too, BTW, but genetic testing was positive).

Testing has been proven wrong more often than "right" and people continue to suffer. Myself included. The "real" diagnosis comes from alleviation of symptoms due to a strict gluten-free diet. Whether it is celiac, gluten intolerance or sensitivity.

Connective tissue disorders are diagnosed through blood panels and can be ordered without a celiac DX. And they may be "negative" too--mine were--- and I suffer from horrid muscle/joint/tissue pain. As Skylark says, some of these things resolve after being gluten free for a while. It is what I pray for every day.

If you have been feeling so well without gluten in your diet, why add it back in? Stay well!!... and if you feel something else is going on--request blood work for sed rate, ANA direct and other tests that help sort out connective tissue and joint diseases. See what is ruled out---if it will put your mind at ease.

Best wishes!

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melikamaui Explorer
melikamaui
Posted

I agree with the others. Why suffer? I had to make the same choice. My son is a diagnosed celiac, and my first test was negative. A year later (just last week) I had the genetic test done, and it was positive for DQ2. That was enough for me and my doctor. I have so many symptoms and have suffered for years. I improve on the gluten-free diet, my son is celiac, that's enough for me. I am celiac and I will never eat gluten again! :D

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Jenniferxgfx Contributor
Jenniferxgfx
Posted

My symptoms were so severe, I had to quit working, but my tests were negative. Being gluten-free is turning my life around, too. I don't want to be the butt of some sadistic doctor's need to confirm common sense with a technologically insufficient test :(

I don't care if it's gluten intolerance or celiac right now, I just want to feel better.

I have a permanent spinal injury, and gluten freedom won't fix everything but it'll help some things! I'll take what I can get.

You shouldn't have to risk your safety for a doctors curiosity :(

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

I'm wondering if some Dr.s push for a test to confirm Celiac/gluten intollerance to justify other follow up blood tests, etc? A lot of medical insurance companies put pressure on them when they order up numerous blood tests, etc. because they want to keep costs down. Having a confirmed diagnosis is what a Dr, needs to justify watching iron levels, b vitamin levels, etc. Maybe you should ask the doc why he wants to do the tests? It could be for a reason like that?

To me it's simple. If gluten males you feel lousy..don't eat it!

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Jenniferxgfx Contributor
Jenniferxgfx
Posted

Really, the symptom of fatigue is enough to justify an iron test, and one low or borderline result is reason to retest later, so I HOPE docs aren't THAT fearful they throw their common sense out the window with their differential diagnosis, you know? But I do think it's a pOssibility :/

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beebs Enthusiast
beebs
  • Author
Posted

I don't live in the US so don't have the insurance thing - but I think my Dr wants me to do a gluten challenge because he is a bit of a gluten denier..he probably isn't the best specialist for me to have - he had my mother convinced that she had bowel cancer and she went for an endo/colo and on the day the Dr doing the tests took some biopsies for Celiac just on the spur of the moment and they came back positive. The specialists hadn't even thought about testing her for it so she had never had bloods or anything, she had been sick for years and lost 45kg..even though she had such classic symptoms for years and now looking back it was so obvious....sigh

Thanks guys, I totally get what you are saying.....I just hate not knowing - it drives me insane. Especially when I talk to other people and specialists..I think I have a problem with Gluten blah blah...My Rheumy is pretty good though - she says the tests can be wrong and that it sounds like I should never eat gluten again :P And that alot of connective tissue affected people go gluten free feel better for it.

I am kind of hoping the connective tissue stuff resolves now that I am gluten free - so here is hoping!! Its been 6 months but if anything my connective tissue stuff is far worse with lots of new symptoms - ugh.

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IrishHeart Veteran
IrishHeart
Posted

gee, beebs, he messed up royally with your mother and now he wants to put you through this? IT is TIME FOR A NEW GI !!!

Stick with the rhuemy (she sounds more gluten-savvy!) and have HER run the tests for connective tissue conditions---that's her specialty anyway! If she suspects celiac, and you have continuing pain (joint pain as well?) ....that's a good enough "cause" for testing!

Best wishes to you!

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beebs Enthusiast
beebs
  • Author
Posted

gee, beebs, he messed up royally with your mother and now he wants to put you through this? IT is TIME FOR A NEW GI !!!

Stick with the rhuemy (she sounds more gluten-savvy!) and have HER run the tests for connective tissue conditions---that's her specialty anyway! If she suspects celiac, and you have continuing pain (joint pain as well?) ....that's a good enough "cause" for testing!

Best wishes to you!

Haha - yes - good point IrishHeart!! I've been gluten free for too long now for testing - the only way to test would be to do a gluten challenge and that could kill me so I guess I'll never really know- although of course I strongly suspect with my family history etcc.

Thanks for the replies everyone!

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Skylark Collaborator
Skylark
Posted

Thanks guys, I totally get what you are saying.....I just hate not knowing - it drives me insane. Especially when I talk to other people and specialists..I think I have a problem with Gluten blah blah...My Rheumy is pretty good though - she says the tests can be wrong and that it sounds like I should never eat gluten again :P And that alot of connective tissue affected people go gluten free feel better for it.

But you do know. You know you are so horribly sensitive to gluten that it gives you symptoms of a potentially fatal condition. Socially it's fine to call yourself celiac. It's only a label and nobody is looking over your medical records.

When you talk to specialists tell them exactly what you did us. The last time you ate gluten you had symptoms of intussception and you are not willing to eat it again to undergo testing. Period. The Hippocratic Oath should prevent them from pursuing a "firm" diagnosis and any doctor that suggests otherwise is hazardous to your health and you immediately know he/she is a bad doctor.

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IrishHeart Veteran
IrishHeart
Posted

Haha - yes - good point IrishHeart!! I've been gluten free for too long now for testing - the only way to test would be to do a gluten challenge and that could kill me so I guess I'll never really know- although of course I strongly suspect with my family history etcc.

Thanks for the replies everyone!

Just for the record...the book Recognizing Celiac Disease by Cleo Libonati, RN lists small bowel intussusception as a symptom in 16% of celiac patients. (page 148) It says a Gluten free diet prevents recurrence. Maybe this should be brought to your doctor's attention? Best wishes.

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beebs Enthusiast
beebs
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Posted

The plot thickens - I asked my old GP for my genes tests that he preformed years ago and it comes to light that he didn't test me - he told me he did. He told me specifically that I was negative for the genes (separately from the coeliac blood panel that he also showed me at the same time) so that I couldn't be celiac. And every specialist since has believed there is no way I could be celiac due to having negative genes...I have no idea why he felt the need to just make it up like that - but anyway - I've just had my genes tested (for real this time) and am awaiting the results not that it will make any difference just another piece of the puzzle. I have all this connective tissue stuff and I have read that if you are undiagnosed celiac it can cause other autoimmune diseases - I hate to think that this possibly could have been prevented. I have had gluten/food issues for 12 years now and no-one ever suggested a celiac test..until my mother was diag 3 years ago....Oh well - onwards and upwards. On a brighter note I just bought my first bread maker - I am so excited!!!

I'm going to get a hold of that book - thanks!!

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IrishHeart Veteran
IrishHeart
Posted

The plot thickens - I asked my old GP for my genes tests that he preformed years ago and it comes to light that he didn't test me - he told me he did. He told me specifically that I was negative for the genes (separately from the coeliac blood panel that he also showed me at the same time) so that I couldn't be celiac. And every specialist since has believed there is no way I could be celiac due to having negative genes...I have no idea why he felt the need to just make it up like that - but anyway - I've just had my genes tested (for real this time) and am awaiting the results not that it will make any difference just another piece of the puzzle. I have all this connective tissue stuff and I have read that if you are undiagnosed celiac it can cause other autoimmune diseases - I hate to think that this possibly could have been prevented. I have had gluten/food issues for 12 years now and no-one ever suggested a celiac test..until my mother was diag 3 years ago....Oh well - onwards and upwards. On a brighter note I just bought my first bread maker - I am so excited!!!

I'm going to get a hold of that book - thanks!!

He LIED to you about a test??? :blink:

Did he say WHY he did this??? That is about as ridiculous as it gets. I have had my share of ridiculous *&^%$! doctors, so I believe anything! I've been left out to dry myself--first presenting with GI issues/gall bladder disease over 25 years ago.--and it just got worse and no one thought it celiac disease because I was overweight (until I dropped 90 lbs. rapidly--even then, it still did not seem like celiac disease to them :rolleyes: ) I'll never understand why they do not just test for celiac disease FIRST. Idiots!!

Anyway, enjoy your new bread maker! :)

Again, if you think you have connective tissue disease, you should have the rheumatologist test you. It's simple blood work.

Good luck, beebs!

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beebs Enthusiast
beebs
  • Author
Posted

He LIED to you about a test??? :blink:

Did he say WHY he did this??? That is about as ridiculous as it gets. I have had my share of ridiculous *&^%$! doctors, so I believe anything! I've been left out to dry myself--first presenting with GI issues/gall bladder disease over 25 years ago.--and it just got worse and no one thought it celiac disease because I was overweight (until I dropped 90 lbs. rapidly--even then, it still did not seem like celiac disease to them :rolleyes: ) I'll never understand why they do not just test for celiac disease FIRST. Idiots!!

Anyway, enjoy your new bread maker! :)

Again, if you think you have connective tissue disease, you should have the rheumatologist test you. It's simple blood work.

Good luck, beebs!

I have a feeling he may have meant to do it - forgot to ask for it and then though that I probably didn't have it anyway so said it was negative??

I have a rheumatologist - have done for 5 years - negative bloods but deffo connective tissue type stuff going on - it is never simple with me -boo

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