I know I'm not answering all your questions - I don't have time just right now - but thought I'd ask if you've seen any of the research looking at the possible environmental triggers? There's some evidence that a yeast infection of some variety triggers the initial immune response to gluten. There's also some evidence that there may be a bacterial link (more likely a lack of certain bacteria than an infection, in this case). And, of course, both of these do tie in with the connection between repeated doses of antibiotics during an illness that often preceeds celiac symptoms.
The inflammation component of many autoimmune diseases, not just celiac, can often have systemic effects, and when you combine that with a leaky gut, where incompletely digested matter can escape the digestive tract and enter the blood stream, the risk of non-gi symptoms likely increases. I haven't specifically seen studies done about the permiability of the gut to opioids (which can be one of the bi-products of the incomplete attempts at breaking down gluten in our intestines), but we already know they can pass the blood-brain barrier.
Anyway, my only point was that pubmed may have some interesting research for you to peruse.
Tiffanyaka "Have I Mentioned Chocolate Lately?" Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy G.F. - September 2003; C.F. - July 2004 Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me Bellevue, WA
red345: I'd like to participate but must find more time.
Tiffany: please expand on the gut...opoids connection.
Husband has Celiac Disease and Husband misdiagnosed for 27 yrs - The misdiagnosis was: IBS or colitis Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest, most prestigious medical groups in northern NJ which constantly advertises themselves as being the "best." This GI told him it was "all in his head." Serious Depressive state ensued Finally Diagnosed with celiac disease in 2003 Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy. Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle Developed neuropathy in 2005 Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003
I'll answer just a few of your questions now, maybe more later as I find this VERY interesting. I was first thought to have systemic lupus as I had several of the main symptoms, including the blood marker. Doc had a wait and see attitude (thankfully) and about a year later the stomach trouble had worsened terribly and I was finally dx'd with celiac disease. Once I went gluten-free nearly all the symptoms of lupus went away, too. I took tetracycline from age 16 to 23 for acne (terrible mistake, acne wasn't even that bad, but a dermatologist prescribed it). Once I became pregnant with my first child I stopped the tetracycline and began having lots of digestive problems. (I lost weight instead of gaining for the first 3 or 4 months.) I was very sick with all three of my pregnancies, very anemic and never gained much weight, although all three children were born very healthy, thank God! After my third and final pregnancy I seemed to never recover, staying sick and anemic and then the lupus symptoms began, then the celiac disease. I've oftened wondered if the tetracycline or the pregnancy was my "trigger" for celiac disease. I may never know for sure, but I think this type of research is SO important and I hope you get many more responses. Good luck! Vicki
Adding a brief reply.......not having a firm diagnosis, my body just feels so much better when I eat gluten-free, going to be taking the Enterolab test this week. These are the similarities with your survey:
1. I have fibromyalgia
2. I have a son with ADD and a granddaughter with celiac disease
3. I am almost sure I have a sensitivity to diary
As I am 59, it is taking awhile to get straightened around here. I find the simpler I eat, the better off I am. As I have had knowledge of this with my granddaughter for five years now (she is six, diagnosed when she was one and VERY sick), I have been surprised at how easy it has been for me to stick with this eating plan, and I think it is because my body wants to eat this way. This is all very interesting as I firmly believe there can be a connection between fibromyalgia and a gluten intolerance and my doctor just rolled his eyes. I will be watching this survey with great interest. Thank you for getting it going, Barbara
3. I had a flu shot about 5 months before diagnosis
4. I was going through a stressful time before my worst symptoms appeared, nothing major, but stressful.
5. see #14
10. I have a family doctor and a GI specialist, both are in agreement with my diagnosis.
12. I react to dairy products (Not sure if I'm intolerant to lactose or casein) but these symptoms started at the same time as my celiac symptoms.
14. I did so many of those stool tests.... and I was tested for parasites (I think) and I may also have been tested for Candida or H. Pylori as well. My GI doc just wanted to rule things out.
17. My family is going to get tested
Diagnosed with Celiac Disease in March 2004 Postitive tTg Blood Test, December 2003 Positive Biopsy, March 3, 2004
I have printed out your info and will read it again. As a nurse I have
problems with your advising everyone to take Probiotics,Natural VitaminE,
and other supplements. Vitamin E can cause a rise in blood pressure in
some people. I think this is very dangerous to give out this "advice".
We have all been ill for long periods of time and I prefer to take the advice
of an M.D. although I have had disagreements with a lot of them, I still
respect their education and experience. What medical school did you graduate from?
WOW-E-WOW---That was some long and involved exchange, but I feel glad that it took place. Having fibromyalgia and feeling that there really can be some connection between it and a gluten intolerance, reading things like this validates that notion. I also feel strongly about the dairy intolerance coming along when the gluten one does. Maybe it has something to do with it all appearing when you are somewhat older. It is interesting that it has all showed up within a year's time frame too!!! Just diagnosed with the fibro last December. If it weren't for this message board, I wouldn't have been able to put it all together, thanks to all who have contributed. Barbara
HEY KEVIN---Just was driving along in my car and was thinking about your original questions. I am on lots of medications and am wondering if all of this stuff is starting to compromise my health. What do you think? Here goes......
Verapamil (to keep the blood pressure low/migraines away), Topomax (to keep the migraines away), Synthroid (thyroid out of whack), Doxepin (depression/and to help with sleep disturbances due to fibromyalgia), Mobic (anti-inflammitory for the pain of fibro). I tried to stop taking the Mobic and my arms, where the fibro has settled, were just killing me.
For a while now, I have been thinking that I wanted to cut back on some of my meds, but I just don't know where to start. I also take supplements:
fish oil, glucosamine, calcium, magnesium with malic acid (for the fibro), vitamin
Kevin: At first I did not think I would reply to your questionnaire, but on reading all this topic, I think I have something worth adding even though I have not been diagnosed with celiac disease. I have had digestive problems since early childhood. I am currently using the SCD diet put out by Elaine Gottschalk in "Breaking the Vicious Cycle" . It's worth a try. Have been on this about 7 weeks now with one major backsliding in mid-August, but have been completely on since then. Have noticed an improvement in energy. Otherwise symptoms are up and down. I am 76 years old. Symptoms have varied over the years. Constipation a major problem in childhood. Teen years, extremely painful sessions of formed stool all day long at intervals. Possibly related to periods.Age 18 given penicillin. Painful sessions stopped, but constipation continued. Treated with mineral oil preparation. 6 healthy children, one miscarriage as a result of being given a cortisone shot for a painful shoulder. Surgeries: tonsillectomy, many sore throats, broken eardrums. Appendectomy because of an attack. Hysterectomy, abnormal cells, cervix. Not cancer. Gallbladder removal last Feb. No change in symptoms: burning pain across right ab. originates in a spot right under my right rib cage in center upper abdomen. Goes to right shoulder blade. Burning goes up and down esophagus into throat and down to bladder, rectum area. Left side comfortable. Other symptoms now. Yesterday, not too bad. Today symptoms very strong. Include: prickling hands, arms, ankles feet. Sometimes I describe it as tingling. Very sore right foot, X-ray shows calcium deposits. Also a 1998 X-ray of bowel showed Mid abdominal vascular calcification suggesting atherosclerotic change of superior mesenteric artery. Sometimes I have an "attack" when an ache goes up my arms, more in the left one than in the right. Goes cross chest. Have had heart exams , normal results. My skull feels tight on the left side. There is a numb, or prickling sensation in face, jaw and down neck. My joints ache. Obviously , this is not incapacitating, just very uncomfortable. Some of this is present most days, but not to this extent. I am not constipated today, have had four sessions of soft stool, but took mineraloil and Milk of Magnesia last night and for several previous nights. I have lost about 30 lbs. in the past year, with ups and downs. 2. Don't remember all the medications I have taken . I did use nearly all the popular antacids before gall bladder removal. Have stopped taking those since they never helped and upper endoscope showed only slight inflammation. Dr. said I could take them or not as I wish. Called it Nerd instead of Gerd. I take a multivitamin that has pharmaceutical glaze, vit. e, cod-liver-oil liquid, (was given that as a young child). chondroitin and glucosamine tab., procreatin, acidophilus, calcium 360mg., chelated magnesium tab. , folic acid, off and on, chromium with B6, Cn't remember if that's all in the a.m,. Was having trouble with very hard stools that required pressure on sore upper ab to pass. Have recently taken Milk of Magnesia, 1 tblsp. and Mineral Oil 1 tblsp. at bedtime. That seems to produce softer stools, but too many. Not sure what is causing what. Sometimes I use Mineral oil enemas or a warm water enema in a cleaned enema bottle. I am assuming that if I indeed have celiac, (blood tests from Mayos came back negative have not had biopsy), I have had it since childhood. Did not take prescription meds or many OtC things back then. I used to use Tylenol, but have stopped taking that in the past 3 months or so.3. Have had the regular childhood vaccinations given back then. Now I have a flu shot every year and have had a tetanus shot within last 5 years. 4. Start of menses when painful stool sessions began. These current burning sensations were going on at least several years before my gallbladder surgery. Only they are worse now. I think. I keep a journal.
5. Have been tested and treated for H.Pylori, not sure about Candida. 6. See No. four. 7. No. 8. I don't know. I wonder. Liver is not enlarged. 9. I have had ulcers but cannot relate that with these symptoms. 10. Not applicable. 11. I do live in Minnesota, I think that these upper burning things have originated since we moved here. We lived in South Dakota, Illinois, Missouri, Papua New Guinea, and North Dakota before moving to Minnesota. 12. Yes, I am lactose intolerant.
Today's worse symptoms may be do to experimenting with taking lactase tab. with yogurt the past week or so. There are other possible variables that may figure in.
13. No., 14. Yes . Was treated for them after leaving New Guinea. Also had parasites after a trip to Mexico in the 70's/ Was given medication. Can't remember the name, but a standard treatment. 15. Yes. I haven't had the test. 16. Not now. Was taken off a year ago after having been on for 15-20 years. 17. No, I live alone. 18. No. 19. I had periodontal surgery in the late 60's. Have had treatment on a regular basis since then , although there has been no return of the disease.
Treatment is basically periodontal cleansing. 20. My youngest sister might have been diagnosed with ADD or even autism today. She still exhibits strong symptoms of the latter. I have a daughter who has a rare syndrome that causes swelling of parts of her body and can be life-threatening. I can't think of the name of it . I don't know if any of this is useful to you since I haven't been diagnosed. I seem to have gone into some detail. I do not expect you to diagnose my ailments or give me any medical advice. Strack 2004
Kevin, I didn't really tie up my answers with your aims for your questionnaire yesterday. A possible connection is that my body aches and abdominal burning seem to be better on the same day and worse at the same time. Also, the name of my oldest daughter's problem is angio-edema, inherited. There are relatively few documented cases of this ailment. She was diagnosed at Mayos. Strack2004