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View Full Version : Celiac/gluten intolerance misdiagnosed as CFS/FM/IBS


Marciab
02-18-2007, 01:05 PM
I was diagnosed with CFS/FM back in 1990. My initial symptoms included fatigue, pain, myoclonus (seizures), ataxia, nueropathies, brain fog, etc.

I went on a the elimination diet (no gluten, soy, dairy, eggs, corn or chemicals) back in July - Sept 2005.

As of Sept 2006, I no longer have ataxia and I only get a mild myoclonus if I accidently eat gluten. I'm still working on the fatigue and brain fog.

This website from the NIH states that celiac / gluten intolerance is often misdiagnosed as CFS and IBS.

NIH = National Institute of Health

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/


I copied a small part of this article in and edited this to allow the paragraphs to be read easier.

*************** NIH celiac article ****************

What is celiac disease?

Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food.


People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley.


Sometimes the disease is triggered-or becomes active for the first time-after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.


----- > WHOA !!!! DID THEY SAY VIRUS ??? Many of us started that way ...


What are the symptoms of celiac disease?


Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body.


Symptoms of celiac disease may include one or more of the following:


gas

recurring abdominal bloating and pain

chronic diarrhea

pale, foul-smelling, or fatty stool

weight loss / weight gain

fatigue

unexplained anemia (a low count of red blood cells causing fatigue)

bone or joint pain

osteoporosis, osteopenia

behavioral changes

tingling numbness in the legs (from nerve damage)

muscle cramps

seizures

missed menstrual periods (often because of excessive weight loss)

infertility, recurrent miscarriage

delayed growth

failure to thrive in infants

pale sores inside the mouth, called aphthous ulcers

tooth discoloration or loss of enamel

itchy skin rash called dermatitis herpetiformis



A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition.



The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications.



Why are celiac symptoms so varied?


Rearchers are studying the reasons celiac disease affects people differently.


Some people develop symptoms as children, others as adults.


Some people with celiac disease may not have symptoms, while others may not know their symptoms are from celiac disease.



How is celiac disease diagnosed?


Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases.


In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn's disease, diverticulitis, intestinal infections, and chronic fatigue syndrome.



---- > WHOA !!! Celiac is confused with CFS ??????




As a result, celiac disease is commonly under diagnosed or misdiagnosed.


Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood.


To diagnose celiac disease, physicians will usually test blood to measure levels of

Immunoglobulin A (IgA)

anti-tissue transglutaminase (tTGA)

IgA anti-endomysium antibodies (AEA)


Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas.


If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present.


If the tests and symptoms suggest celiac disease, the doctor will perform a small bowel biopsy.



***************** End of report ***********


The people here and at the celiac dot com message board are very knowledgable and helpful. But there is tons of info on the net.

FYI: The tests for celiac are not as good as they should be at this point, so the only real way of know if the diet will help you is to try it. I recommend fresh fruits, veggies and meats and raw nuts and seeds so you get your nutrients too. :D

Hope this helps someone .. Marcia

Edited to add: I also eliminated corn, soy, dairy, eggs and chemicals, back in July 2005. But, I believe my problems were from undiagnosed celiac (gluten). I have read on this board and elsewhere, that dairy, corn, soy and chemicals can make us sick too.

Please check this out for yourselves ... Marcia

NancyM
02-22-2007, 02:30 PM
I also had to eliminate dairy to get 100% back to normal. It is something to try if just going GF isn't quite enough. :)

Marciab
02-23-2007, 11:05 AM
I also had to eliminate dairy to get 100% back to normal. It is something to try if just going GF isn't quite enough. :)

Thanks Nancy,

I've met others on the celiac board who have had to do this too. Or eliminate legumes, etc. It is just amazing to me that there isn't more info out there about this ....

I can't digest most dairy, but I am still drinking kefir made from dairy. I've read that most of the protein is removed when kefir is processed, but I am still thinking I should stop drinking it too. I just need the probiotics and haven't taken the time to make my own coconut milk kefir.

Probiotics really help calm my stomach.

I did finally give up peanut butter though ... (She says as that last unopened jar is calling her name ... :D )

Glad to hear you are feeling better. Marcia

cariqueen
02-28-2007, 10:47 AM
I'm the same way, no wheat and no dairy. It took me a long time to realize this. I had no clue that these foods were making me feel so bad until my chiropractor gave me a pamphlet about cfs and the first thing it talked about was food intolerance. It's not just an allergy, it's the body's adverse reaction to certain foods.

Wheat makes me very weak and milk makes me feel really awful, but not right after I consume them, so it wasn't obvious. It took weeks for them to get out of my system and to notice improvement when I cut them out of my diet.

You'd think that something this widespread would at least get a mention on the news. Oh well.

karen

Marciab
02-28-2007, 11:48 AM
Cariqueen,

Thanks for replying. It's good to hear from others who have found some relief from their symptoms. It's such a shame that we are not being told by our doctors about how food intolerances can affect us though ...

Marcia

TxLabLover
03-11-2007, 05:24 PM
Hey there Marcia,

How do you like raw cashew butter? It's ever so much tastier than peanut butter. Course I'm not a big peanut fan, even if I was raised in the South. ;)

Anyway, a lot of raw nut butters are wonderful and also easily made in a little food processor if you can't find them at a local health food store. They dress up dehydrated crackers quite a bit, too, though frankly who needs crackers when we all have fingers?? :D

Macadamia butter, now that's a personal favorite. Made in tiny batches every great once in a while, of course. Super big treat. Can't eat just one. Bite that is.

If you don't want that last jar of peanut butter to go to waste, the birds love it smeared on anything and dipped in birdseed. :)

BTW, how impressed are you and Cariqueen that I have an avatar? ME TOO!!!!! lol

TLL

Marciab
03-11-2007, 06:59 PM
Hi Tx,

Love the avatar. :)

I like most nut butters, but the last time I priced almost butter is was $11. GEESH ...

Glad you could join us ... Marcia

Marciab
06-24-2007, 10:45 PM
Hi All,

I wanted to update this thread and let you know that I have the celiac DQ 2 gene. The NIH is right, there are people with celiac who are being misdiagnosed ... OK .. in all fairness I could have both celiac and CFS :p

My biopsy taken 18 months post gluten free is negative for celiac, but there is damage and my GI says it is suspect. It looks like a 4 or 5 on the Marsh scale to me. That was the reason my doc ordered the genetic tests.

And of course the blood work for antibodies, 18 months after eliminating gluten, was negative ...

I just want to make a quick recap here so no one misses this ... :) Lord knows I am not too quick myself ... :rolleyes:

I didn't have major digestive problems until 15 years after coming down with CFS/CFIDS/FM/ME (whatever they are calling it today !) Only mild IBS ...

And my initial symptoms, ataxia, myoclonus and insomnia were eliminated after 1 year going on the GFDFSFEFCF diet. (You probably don't have to eliminate all the foods I did. I believe my intolerances are due to the fact that my digestive looks like it was lawnmowered !! )

I am still working on the cognitive problems and the fatigue, but they aren't as bad as they were ... Now, I'm into menopause, so who knows what will fall off next :D

Hope this helps someone ... Marcia

BTW You can be sensitive to gluten, dairy, etc and not have the celiac gene or positive antibodies. You really have to take these foods out of your diet to see if you are better off without it.

Cry Tears
07-29-2007, 05:13 PM
BTW You can be sensitive to gluten, dairy, etc and not have the celiac gene or positive antibodies. You really have to take these foods out of your diet to see if you are better off without it.

Bingo! How true this statment is!
So far I've had 4 biopsys...testing for C-sprue, Gastro suspects I may have it, but says "NO" since all testings come back negative for it.
But guess what?!?! I feeeeeeeeel soooooooooo much better without wheat and a few other foods!
No more all night sit'n'sit on the toilet unless I'm foolish enough to take a few bites of forbiddens....but I'm like Eve in the Garden of Eatin!
No more nauseus gas and gut pains....only IF I keep from swallowing grains and gluten ladened foods!
All the years of suffering....if only..if only...years ago I would have known this, perhaps wouldn't have suffered so much for so long.
All you have to do is just try a few weeks, see if it helps by eliminating problematic foods.
thanks for the info, cheryl

Marciab
07-30-2007, 09:08 PM
Bingo! How true this statment is!
So far I've had 4 biopsys...testing for C-sprue, Gastro suspects I may have it, but says "NO" since all testings come back negative for it.
But guess what?!?! I feeeeeeeeel soooooooooo much better without wheat and a few other foods!
No more all night sit'n'sit on the toilet unless I'm foolish enough to take a few bites of forbiddens....but I'm like Eve in the Garden of Eatin!
No more nauseus gas and gut pains....only IF I keep from swallowing grains and gluten ladened foods!
All the years of suffering....if only..if only...years ago I would have known this, perhaps wouldn't have suffered so much for so long.
All you have to do is just try a few weeks, see if it helps by eliminating problematic foods.
thanks for the info, cheryl

Cheryl,

Congratulations on your improved health. I felt like I had won the lottery when I first discovered all this too ... :D

You mentioned that you've had 4 negative biopsies and I'm sure my biopsies would have been negative too for the first 15 years of this illness. I didn't get the diarhea doctors look for in order to test for celiac until July 2005.

I'll always wonder if eliminating gluten back in 1990 would have "cured" my CFS/FM immediately. And just how much damage was caused by continuing to eat it.

Best wishes ... Marcia