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Fibromyalgia and Celiac Disease - By Ronald Hoggan

Don Wiss forwarded the following post to me:

I know you have studied celiac disease for a long time. However, I need to disagree with the statement that fibromyalgia indicates celiac disease. It has been proven that persons with fibromyalgia have a decreased amount of serotonin and an increased amount of substance P in their spinal fluid. This indicates it is a result of not enough serotonin in the brain. Many of us who suffer from fibromyalgia do not have any problems with the digestive system at all. There are also PET scans that indicate that fibromyalgia patients have less dopamine activity in the brain indicating it truly is more a brain disease than celiac.

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The posters first point differentiating celiac disease from fibromyalgia on the basis of reduced serotonin in fibromyalgia may be unaware of the finding that celiac patients have fewer serotonin receptors on their platelets (1). Although I dont know about the spinal fluid, elevated levels of substance P have also been reported in the intestinal mucosa of celiac patients (2,3,4,5). A lack of digestive problems does not rule out celiac disease, as one of the foremost researchers in that area has reported that 50% to 60% of untreated celiacs are asymptomatic (6). Altered dopamine activity has also been reported in celiac disease (7). As regards the posters contention that it is really more a brain disease than celiac disease, the connections between celiac disease and altered brain perfusion (8), epilepsy without cerebral calcifications (9), epilepsy with cerebral calcifications (10, 11), a wide variety of neuropathic symptoms (12), and a number of psychiatric ailments (13), all counter the posters perspective.

Finally, if (the poster) says that her fibromyalgia symptoms go away when gluten-free, and return when she eats gluten, I believe her.

Sources:

  • Chiaravalloti G, et al. Platelet serotonin transporter in celiac disease. Acta Paediatr. 1997 Jul;86(7):696-9.
  • Sjolund K, et al. Enteropathy of celiac disease in adults: Increased number of enterochromaffin cells the duodenal mucosa. Gut. 1982 Jan;23(1):42-8.
  • Sjolund K, et al. Duodenal endocrine cells in adult celiac disease. Gut. 1979 Jul;20(7):547-52.
  • Bloom SR. Hormonal peptides of the gastrointestinal tract. Eur J Clin Invest. 1979 Apr;9(2 Pt 1):111-3.
  • Domschke S, et al. Celiac sprue: abnormalities of the hormone profile of gastroduodenal mucosa. Scand J Gastroenterol Suppl. 1989;167:86-9.
  • Marsh MN, et al. Morphology of the mucosal lesion in gluten sensitivity. Baillieres Clin Gastroenterol. 1995 Jun;9(2): 273-93. Review.
  • Hallert C, et al. Psychic disturbances in adult celiac disease. III. Reduced central monoamine metabolism and signs of depression. Scand J Gastroenterol. 1982 Jan;17(1):25-8.
  • De Santis A, et al. Schizophrenic symptoms and SPECT abnormalities in a celiac patient: regression after a gluten-free diet. J Intern Med. 1997 Nov;242(5):421-3.
  • Cronin CC, et al. Celiac disease and epilepsy. QJM. 1998 Apr;91(4):303-8.
  • Bernasconi A, et al. Celiac disease, bilateral occipital calcifications and intractable epilepsy: mechanisms of seizure origin. Epilepsia. 1998 Mar;39(3):300-6.
  • Hernandez MA, et al. Epilepsy, cerebral calcifications and clinical or subclinical celiac disease. Course and follow up with gluten-free diet. Seizure. 1998 Feb;7(1):49-54.
  • Hadjivassiliou M, et al. Clinical, radiological, neurophysiological, and neuropathological characteristics of gluten ataxia. Lancet. 1998 Nov 14;352(9140):1582-5
  • Hoggan, R. Absolutisms Hidden Message for Medical Scientism. Interchange. 1997; 28(2/3): 183-189.

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12 Responses:

 
christina J Gallagher
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said this on
19 Oct 2007 7:12:53 AM PDT
In addition to a sore shoulder, I had a five day, full blown celiac attack recently when I had a tetanus inoculation. Has anyone else experienced that pleasure?
I have suffered from celiac disease for 30 years and I have sufffered from fibromyalgia for 20 years which was finally diagnosed properly by my PCP. My daughter diagnosed my celiac disease 5 years ago. She is in the health care profession, along with one of my sons, who is a doctor (BS, MBA, MD/PHD). My daughter has celiac disease, also. However, my fibromyalgia has continued to worsen. To be fair, I have multple health issues, one of which is degenerative arthritis in both knees, both hips and both thumbs, which contribute to my continued pain.
Eliminating gluten from my diet has changed my life for the better. I do not EVER eat anything that has not been prepared by either myself or my daughter: no fast foods for us, since we have multiple allergies, also.

 
Susan
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said this on
25 Jan 2010 10:37:20 AM PDT
My celiac son had a seizure when he had a tetanus shot.

 
Jane
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said this on
18 Jan 2012 9:18:43 PM PDT
Oh, lord, you sound like me; only I didn't know I had Gluten problems and when I tried the gluten free diet, well, I didn't want it to be true. So, I went back to eating it...in force, you might say and have gotten considerably worse. From what I know, I may have had it all my life, definitely since I was 16, slim and had a gallbladder attack. I cannot eat nightshades, horrid arthritis from them. I won't eat animals. Now, this. Oh, and my reactive hypoglycemia...gastritis...chronic fatigue...complex regional pain syndrome from a fall that damaged a nerve and the list goes on. A lot of it relates back to celiac disease. I've had Fibromyalgia about 20 years, though I was diagnosed about 8 to 10 years ago. Oh, and the osteoarthritis in my neck (not the same as my other arthritis, oh joy) is getting to the point of screaming pain and I have to wear a collar at times. I'm degenerating also and my poor husband is a mess along with me because of it. He can't stand to see me suffer. Thank you for your input.

 
Sandy
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said this on
21 Jan 2008 12:06:58 PM PDT
I have Fibro and Chronic Fatigue both and have recently started with a gluten-free diet. I have done well on the diet however I have slipped a few times just out of habit. I am finding that foods are really expensive and very difficult to find in our area. I also would like to find out if I could use the tax deduction for the foods since I have been diagnosed with the two syndromes that I do believe are connected to Gluten. I also found out today that problems with your blood, such as low iron and etc. are/can be related to Celiac. I have a difficult time keeping platelet levels up as well as Ferritin (iron deposits in your body). I can't afford the testing for celiac so I am doing the next best thing.

 
Erika
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said this on
06 Jun 2008 9:54:36 PM PDT
It is important to realize that Celiac Disease has more than 200 symptoms, and that not all Celiacs have digestive problems. Some Celiacs have no symptoms at all. Some research has found that the lesions in the small intestine (Leaky Guy Syndrome) allows fungus and bacteria to pass into new systems of the body, including the Central Nervous System. The resulting infections manifest themselves as a wide variety of problems, mild to severe (including Multiple Sclerosis, osteoporosis, depression, numbness, etc). So, the low seratonin levels that lead to fibromyalgia may very well be a result of an infection that began in the CNS. Its always important to realize that a symptom of an illness could actually be a symptom of a symptom of an illness.

 
J Bramwell
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said this on
11 Mar 2011 3:35:50 PM PDT
I found out by accident that my fibro symptoms improved when I went gluten free to try and get rid of my allergies i.e. hay fever etc...my pain went down...and if I accidentally ate gluten I would be ill . the longer I go gluten free, the more violent the attacks if I accidentally ingest gluten...severe pain and now diarrhea as well.

 
cyndi
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said this on
11 May 2011 6:04:43 PM PDT
I have had this same experience. I love to weight train and decided to try an eat clean diet. In doing this my fibro seemed to be getting better. Then one day after weeks of eating all natural foods (nothing processed) I ate something with gluten in it and had a terrible flare up. My doctor suggested to test for Celiacs. I'm waiting for my results but am feeling it may be the answer to years of suffering.

 
Rosie
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said this on
15 Jan 2012 3:26:14 PM PDT
I agree with what Cynthia had to say.

 
giselle
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said this on
16 May 2012 12:28:24 AM PDT
I am a 33 year old woman with 2 young children and a husband who's practically working for 2, as i cannot, due to fibromyalgia, consider myself (my body) reliable to apply for work anymore. I was diagnosed 3 years ago but I think I had it for about 8 years, right after the first child. These last months I am having MUCH MORE bowel trouble, i am even afraid to go out. I am undergoing some tests for ceoliac and doc said that 99% I am coeliac positive. What came first: the hen or the egg??

 
Gail

said this on
21 Apr 2014 1:50:24 AM PDT
I have fibromyalgia and my Mother is celiac sprue. It took 4 yrs for my diagnosis as a fibromyalgia condition. Several surgeries, blood test, DNA... all came out Negative! For everything imaginable!!! I Have fibromyalgia! This condition as well as celiac is hereditary. My Brother and my niece have celiac and my sister and I have fibromyalgia. It is just a coincidence I have both in my family and I am appalled that anyone would say they are connected! Serotonin and pain receptors or not the same as the bodies complete rejection of all gluten and gluten enhanced products. My Mother at 81 has better communication skills then I do at 51. She can get around better than I can..really now! Just because you find one or two people with fibromyalgia and celiac, does not mean it's related. They are two very distinct conditions or diseases, how ever you want to label them. Check with the latest on sub base chemical level breakdowns, and perhaps you might be more intrigued with the knowledge you have gained. There is NO food that makes a difference for fibromyalgia....only for celiacs! Food has nothing to do with fibromyalgia! Anyone with fibromyalgia that gets better with food changes of any kind, has more than fibromyalgia and have been diagnosed in error!!!! Ummm, meaning lazy doctors and just don't have the time to spend find out what is really going on. I had to ask my Doctor for at least a 30 minute time frame so I could talk about all the test and how I was not coping. Four Years.... Four Years.... and useless surgeries and CAT Scans and MRI's, and multiple test including psychiatric evaluations! Nothing! This was in the early (90)s. Now if they can't figure It out they say it's celiac or fibromyalgia. And by this article... Both.... WHAT A JOKE! Get the sub bases of Serotonin's breakdown genomes and sub neuro receptors and you'll see a complete difference!!!

 
admin
( Author)
said this on
22 Apr 2014 9:50:24 AM PDT
Please nots that one very basic understanding fact that is supported by many studies is that autoimmune diseases are related--which means that if you have one, you are more likely to have or get another.

 
Daqwn
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said this on
19 Feb 2016 9:03:57 PM PDT
CURED by Fibromyalgia with a GLUTEN-FREE DIET. Really, It was accidental, I got diagnosed with gluten-intolerance after 5 years of being diagnosed with Fibro. A year after I went on the gluten-free diet, I woke up and all my pain in my body was gone. Now, if I even cheat by eating gluten, the pain comes flying right back. Since then, I have been diagnosed with celiac disease.




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I have 2 copies of DQ9. One from each parent.

Obviously from the outside it's difficult to comment, but if I were you I'd leave allergies for now and pursue definitive celiac testing via your doctor and preferably a gastroenterologist. They're the first port of call for digestion issues. If you do wind up being celiac it's possible that other allergies or intolerances would resolve or improve in any case once you've been on the diet for awhile. That's been my experience. Ps note that wheat allergy is completely different and unrelated to celiac or non celiac gluten sensitivity.

Thank you ps, it may be better if the thread title was changed as we now have two 'overwhelmed' topics. If it were 'Bile ducts and celiac?' then it may attract more users with direct experience?

Hello and welcome Maybe? From reading others accounts there's a big variation in how quickly gluten antibodies respond to the gluten diet. I did similar to you and my doctor said that 1 week back on should be enough to show up in a test, but he didn't know what he was talking about sadly... The 2 week figure refers to the endoscopy, for blood testing 8-12 weeks on gluten is more normal. Basically if it comes back positive fine you have your answer. If its negative it may be a false negative due to your going gluten free beforehand. If you want to pursue a diagnosis then yes. Don't go off gluten again until you confirm that all testing is complete. Keep a journal noting any symptoms, that may be useful to you later. More info here: There's some good info in the site faq: https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/ I know how you feel! Partway through my gluten challenge I knew that too results notwithstanding. Fwiw I think you've found your answer. Good luck!

Learn more about testing for celiac disease here: http://www.cureceliacdisease.org/screening/ You do have to be on a gluten diet for ANY of the celiac tests (blood and biopsy) to work. While the endoscopy (with biopsies) can reveal villi damage, many other things besides celiac disease can cause villi damage too: http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ So, both the blood test and endoscopy are usually ordered. There are some exceptions, but those are not common.