epilepsy, seizures and gluten: from Tara on 2009-12-27
My daughter has CD. At age 14, she had her first grand-mal seizure and another one 3 weeks after the first. We took her off gluten (made our household entirely gluten-free) and she had no seizures for 4 years - until she went to college. She roomed in an apartment on campus with 4 girls - sharing a kitchen. We believe the cross-contamination caused another seizure because we subsequently moved her into her own place and she's been good for the past year. She's never been on any medication. The neurologist believes she has a very low tolerance threshold for gluten.
It is easy enough to get the testing and try the diet. I think the stool tests are most sensitive and its easy to verify the presence of the HLA DQ2 and or HLA DQ8 gene - a simple swab of the inside of the cheek.
In my experience, most physicians know very little about CD. They still think it presents as only a digestive disorder and that very few people have the disease. Dr. Fassano has done some really good research and wrote a good article in the August 2009 Scientific American magazine. Also, the book "Dangerous Grains" is a very good read.
I think gluten induced seizures are much more common than people think and in the near future - the medical community is going to FINALLY figure this out and get these children off these dangerous medications and put them on gluten free diets
Gluten intolerance: from Aubrey on 2009-12-30
I am checking out info on the web about celiac disease. I have never been tested but plan to ask my doc to do this. I have had ulcerative colitis/crohn's disease, thyroid diseas (Graves), losing skin pigment in symmetrical pattern all over the body (vitiligo) and I have just recently been diagnosed with ankylosing spondyltis (type of arthritis). Doctors have also suspected Lyme's disease and I was told that I probably have fibromyalgia as well. My endocrinologist has concerns about persistent vitamin deficiencies that show up in my bloodwork, but my colon doc says that it is probably just a poor diet... I am wondering is it possible that I actually may have celiac disease or gluten intolerance that is an uderlying cause of all my autoimmune problems? Is it possible that I have not ever been tested? I find it hard to believe that my doctors may not have ever tested me for this prior to all of my intestinal surgeries, etc (including the total removal of my large intestine, an ileostomy bag and J-puch reconstruction). WOuld be great if I could feel better through a gluten-free diet and I am considering just trying it on my own, but I am not sure if there is a reason to get a diagnosis first... ANy guidance or advice would be appreciated. I am 35 and have 3 children but most days I feel like I am in my 80s. SOunds like many can relate to this feeling unfortunately
Gluten Intolerance and Ulcerative Colitis: from Aubrey on 2009-12-30
I have had ulcerative colitis for 15 years and suspect a gluten intolerance/allergy. I do't know that I have ever been tested for it, but I also wonder whether a gluten sensitivity is the underlying cause for my colitis (and other autoimmune problems--thyroid, skin, ankylosing spondylitis/arthrits). I plan tp request a blood test at my next dr appt. I am thinking of trying the GF diet myself to see if it helps. Although I would be relieved to kno0w the cause and have hope for improvement, it would also be frustrating since I have had a total colectomy (removed entire large intestine and part of the ileum), I had an ileostomy bag for one year, and a J-puch reconstruct. All of these surgeries are in addition to years of pain and low quality of life, many hospitalizations with flare ups. If it does turn out to be gluten--I know I will wish I had known years ago and could get those years back (I have 3 young children). Good luck! I am interested to hear more
Re Gluten Intolerance and Ulcerative Colitis: from Aubrey on 2009-12-30
YOu sound like me! I too have ulcerative colitis and ankylosing spondylitis as well as thyroid problems. I had my colon removed, had an ileostomy bag for a year and was then reconnected with a J-pouch procedure. I am now wondering if I have underlying celiac disease... I have had stomach problems since infancy--was allergic to soy and milk. Anyway, I am looking for answers and open to suggestions. I am about to start Enbrel injections for the artritis. Can anyone tell me about this medicine? I think I am suppsoed to do weekly injections
Gluten intolerance: from Peter on 2009-12-30
There is quite a high possibility that all your problems have a single cause. They can all be the result of an intolerance to gluten, and the adverse reactions to soy and milk are typical of this as well.
It is very important that you have the blood tests before you start as gluten-free diet, but as soon as these are done you could start a gluten-free diet - it must be completely gluten-free to be effective.
The tests may be negative, but you may still find the gluten-free diet very effective.
There is another condition called the 'leaky gut syndrome' which can also produce this typical range of symptoms. It is partly the result of too much fine grains of food being absorbed by the gut lining without proper digestion, and causing inflammation and autoimmune response throughout the body. Avoid products made from fine flour when you try the GF diet. Eat potato, rice, quinoa, sweetcorn rather than GF bread, cake and biscuits
What you can eat on a gluten-free diet: from lisa on 2010-01-09
I get the flour and wheat, the big stuff. It's the other stuff that I'm not sure on. When you look at ingredients they have these big words that you have never heard of and you can't pronounce! How do you know what is ok
Re: gluten and clinical depression: from Sharon MacDiarmid on 2010-01-11
I have read that often people who have celiac disease also have sentitivites to foods like corn, fructose, dairy, yeast, soya and I've found all of these affect me in some way. Maybe you're eating more of something now and that is causing the depression
Gluten, wheat and dairy free Cakes and Wedding cakes: from Charlotte on 2010-01-11
I make any type of gluten, wheat and dairy free cakes, including wedding cakes. Please email me if I can be of assistance - I am London based and can ship - very reasonable prices too!
Email:char8491 -at- aol.com
Re: Gluten intolerance and Pain: from Margaret Pickering on 2010-01-15
Hi, My daughter was diagnosed with RA but she did a food elimination diet and was much improved. However, due to a lot of weightloss she now is eating all the foods she shouldn't. My question is, did anybody actually feel worse before feeling better when eliminating gluten. I seem to remember that when she first eliminated gluten she was in so much pain but then it went away.
Any help would be gratefully received, plus help with other foods to eliminate such as aspartame.
KIDNEYS? What you can eat on a gluten-free diet: from Humberto on 2010-02-06
After a couple of months of serious illness that happily ended with my gluten intake, last year I discovered that I am celiac. The learning process was hard and I kept poisoning myself, but after a couple of months of trial-and-error and reading useful websites like this (thank you!) I managed to keep 100\% gluten-free. I am doing quite well now, feel 10 years younger, and do not miss any gluten-based food.
However, two weeks ago I prepared lamb kidneys and, surprisingly, managed to poison myself with gluten. The symptoms were unequivocal and I am 100\% sure that did not eat gluten from other sources as I cooked everything at home. Apart from the kidneys everything was “food as usual”.
I washed the kidneys well and removed the inner bits as required, but suspect that there were traces of lamb urine (sorry if this sounds disgusting). Would it be possible that this urine contained some gluten from the animal food? What are the risks of eating gluten from offal?
Thank you for your answer!
PS: I am also happy to help whoever has gluten-related questions!