I'm not only firing my own doctor, I'm firing all of them. I go to a naturopath and I eat really well. That seems to do it. I'm taking the job.
I love this post! I feel the same way. However, today I am somewhat hopeful. I had an appointment with a new doctor - a young woman - who not only listened but seemed to click socially with me as we had a lot of shared interests. When I told her my theory on how I think celiac disease may have been dormant and then triggered by Giardia which some studies have said shares the same protein, she finished my thoughts and confirmed it. That's a great sign! She is going to test me for hypothyroidism, and she said she would test for celiac disease also. She asked me if I had ever seen an allergist, and if I had ever had a colonoscopy.. I told her no one had ever referred me. My next appointment is August 22nd. I feel hopeful about her. Of course, in keeping on topic with this thread, she did sneer at my other theory about Candida A. in my gut. Well, no big surprise with allopathic doctors.
But, I'm hopeful.
-First overt but unrecognized symptoms after reintroducing dairy and wheat to my diet after a 2-month absence, 2002.
-First appearance of chronic aphthous stomatiti, 2002.
-Giardia infection and treatment with albenzole, 2005.
-Persistent symptoms and treated for Giardia again with Flagyl twice (without testing), 2006.
-Dx milk allergy from a blood test, April 2007.
-Also presented for anemia, high white blood cell count, and candida in the same test. Dx IBS, April 2007.
-Response to diet and self-diagnosis through overwhelming symptoms and possible genetic link (hypothyroidism, fibromyalgia runs in the family), April 2008
-Currently learning to go gluten-free (April 2008), and coping with new sensitivities.
When you figure out gluten is a problem ON YOUR OWN through an elimination diet, and you go to the Dr for a celiac blood test, and she says, "You don't have diarrhea. You can't have celiac disease unless you have diarrhea."
When the blood test comes back negative and the Dr says, "See, I told you so. You have IBS. Let me give you a prescription."
When you insist that gluten is the problem, due to dietary response, and she says, "You don't want to be on a gluten-free diet. It's impossible."
OMG - This is SOOOO my story! Have had 3 doctors say the same thing to me - one of which was a gastro enterologist!!
All 3 have told me I have IBS and I have to eat more fibre and try metamucil. When I said the metamucil just makes my constipation worse (because it has wheat in it) they told me to take a laxitive....One doctor told me I should be on anti depressants! Im only drepressed after I eat gluten!!!!
Its so difficult! I know im better on a gluten-free diet. I know im not so constipated on a gluten-free diet, I dont get bloating and stomach cramps and I dont get depression....Im sticking to my diet!!
Diagnosed with IBS - October 2007
Despite testing negative in bloodtests - still getting Celiac symptoms.
Gluten Free trial begins - May 2008
Positve dietary response! Woo!
Lactose free aswell - December 2008
When they tell you your results can't be conclusive, after having an unnecessary endoscopy and bloodwork, because you haven't been eating wheat gluten. She didn't tell me before the tests because she didn't want me to risk having an allergic reaction.
Thanks for wasting my time and money, lady. You could have told me ahead of time that they wouldn't be conclusive.
When the doctor tells you that they are going to do a blood test for celiac disease, and you tell them that it wont work cuz you havent eaten gluten in 8 months. But the doctor insists it will work. Really do you want a doctor that does not remember basic biology. When testing for antibodys first the body must have that (this case gluten) that makes your body attacks in your system. Duh....! I don't even have a college degree.
I am new here and love this forum and this particular thread. I just found out earlier this year that I am gluten intolerant. Not sure if I have celiac disease or what the exact difference is. Years ago I started going to regular GI docs and was told to take fiber, etc. and eventually that it's all in my head and I need to take an antidepressant. I have other issues, too, like candidiasis, other food intolerances, Epstein Barr and more.
I read somewhere in this thread that someone with undetected gluten intolerance also developed intolerances to most other health foods like fruits, veggies, etc. The doctor who detected the gluten intolerance said the true food intolerances are gluten (and wheat), soy, eggs, and dairy. Any other reactions to foods are as a result of the damage eating those five foods have caused. A friend of mine in Germany who is a naturopath agrees. In the past, before I knew about the gluten intolerance, I used to get ELISA food allergy tests. I believed them and in rotation diets and such. However, last year I had one done by a reputable lab in Germany and exactly a week later the same test was done again with some additional foods tested and within that week I had differences. Some foods that showed up non-reactive on the first test were highly reactive on the second test and the other way around. After that I did some research and found that this is quite common.
Anyway, I was wondering what kind of experience everybody else has had with reacting to foods other than gluten. Did you have problems and if so, did those eventually go away as you started avoiding gluten? Did you continue eating those foods or avoid them for a while and then re-introduce them?
My story is perhaps not typical because I recognized problems with corn and lactose, and then tested sensitive to soy, long before knowing gluten was a problem. I definitely avoided corn and milk and cream and ice cream, and was soy-lite for years before going gluten-free (self-diagnosed, it runs in the family). At that time I was so busy looking for gluten that I really didn't pay attention to whether there was soy in things until I developed a huge, red rash, extreme itchiness, hives, etc., and folks on here suggested soy. Well, of course, I had done a lot of replacement of foods with their gluten-free equivalents and almost all of them contained quite large quantities of soy. So that went out the window. Next came the nightshade family, although I have reintroduced potato and some small quantities of tomato, but definitely no green peppers, and I haven't tried eggplant yet because dh isn't particularly fond. My naturopathic testing showed up not just lactose but casein and also eggs, so gave those two up for three weeks but I got worse, and without my morning yogurt I was a basket case. So I added them back in and felt better again. I don't really believe that I am intolerant of eggs and casein).
I have had two outbreaks of splotchy red itchy rash on my face, one after taking a sublingual B12 (think it might have been the mannitol) and again after taking anthocyanin supplements. Now I have been prescribed Humira for my psoriatic arthritis and find that it contains mannitol, so am trying to track down some pure mannitol to test before I start the injections. It is important to me because before I can take the Humira I have to take an antibiotic called Isoniazid in case I have TB (the course lasts 6 months) because I always test positive on the Mantoux test because I had a BCG immunization as a teenager and they can't rule out that I don't have it. The Humira can give you an extreme case if you do happen to carry it. I am sure that this Isoniazid will play havoc with my GI system (the warnings sthat come with it are pages long) and I don't want to take it if I don't have to. In the meantime I am testing my vitamin and mineral levels for deficiencies to try to get those under control and work on my skin problems.
So you see, like so many here, there are multiple sensitivities and some of them can go away after time and some do not. I can eat corn (although I don't do massive quantities) here in NZ because it is not GM. But I think all soy in the western world is GM and I totally avoid it (even the soya lecithin in chocolate which I am doing really hard) and all wheat is so hybridized that even if we could eat it originally we sensitive ones certainly never can again. I can eat organic beef but not regular beef. So I have switched to all organic chicken before I become sensitive to that. And I try not to eat too much of any one thing.
I have been gluten free for 10 months, soy free for 6 months, and green pepper free for approx. 5 mos. (and lactose free for 16 years).
Hope this information is of some help to you. I have no problems with fruit (except the anthocyanin supplements which were pretty concentrated). Haven't tried berries again yet, giving my system a chance to forget about that reaction.
Good luck on your own detective work, because you really do have to take charge yourself and discover what your own particular problems are (and as ShayFL says, use the medical people as your assistants.) And everyone here is always ready to help.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
By accident, you find out that you have major bone loss. Your doctor does a few tests, all come back normal and then he tells you that the cause of your bone loss is because you are thin. And you are only 27 years old! That was fun.
My other favorite was post diagnosis. My new doctor read my chart and said: “so you can’t have gluten? Does that mean you have to follow a special diet or something?”
Gluten free since June 25, 2007
Dairy free since August 2008
Your doctor thinks that Celiac is a discontinued model from Toyota
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
How about when your doc:
a) implies that problems with gluten are all in your head. (considering you used to come in regularly for issues with asthma, eczema, and constipation....) tells you that celiac is not prevalent in african-americans...so there's no need to test.
when the allergist diagnoses your son and says:
he's allergic to wheat, rye, barley, oats..
You respond: We'll continue to follow a Gluten-free diet.
He's not allergic to gluten- just wheat, rye, barley and oats...
...or when the GI dr tells your oldest son that sinus problems really have nothing to do with celiac disease and when you call for an appt for your youngest son, and the receptionist asks for his symptoms then tells you, "headaches really have nothing to do with celiac disease; he should see another specialist for that."
This is a great thread! I am so glad to read all of your stories. It's so nice to not be alone. I had a different condition that stumped the first couple of doctors that I saw, the first of which I had seen repeatedly for months. I am blessed, though, in that my doctor suggested celiac disease right off the bat. I was the one who told her it couldn't be that and refused to go to a GI doc for about a year. I had just come off dairy and was feeling a lot better and the pain felt gall bladdery anyway. (I've since read that there is a connection between gall bladder disease and celiac disease.) After a year of on again off again pain, and then realizing I was still having diarrhea, just not as often without the dairy, I decided to cooperate with my doctor.
It seems like the other couple of frustrating health issues I've had were more difficult to dx and treat than celiac disease. I don't even know that I have celiac disease for sure, just that de-glutening has made a WORLD of difference.
Thanks for sharing, all.
gluten-free since June 2008 - Blood tests were inconclusive, and biopsies were neg., but elimination of gluten has brought much relief. Dairy free since May 2005 - Allergy testing was negative, but ingesting dairy is positively horrible. Egg free since May 2005 - Positive allergy test in 1997, but the love of the occasional donut made it impossible for me to go totally egg free until I realized how much damage I was doing to my system. Chicken and turkey free since 1997 - Positive allergy test in 1997. Who needs chicken and turkey, anyway?
Your Dr. tells you that you are getting older and therefore probably becoming intollerent to Gluten. So go lactose free and cut back whole grain foods and you should probably take a daily stool softener so that when you don't have diarrhea you won't have to strain.
Transplanted Southerner in Sunny So.Cal.
Misdiagnosed 47 years
Diagnosed Gluten Intollerent Aug. 22. '08
Blood Tests Weak Positive to Negative probably due to low Gluten intake for 8 weeks before testing.
Opted not to have Biopsy.
Positive DH testing Oct. 30,'08
Gluten free since Oct. 28, '08