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CHISKA Posts: 219
3/22/09 11:18 P
I was diagnosed with Grave's Disease first and when I wasn't responding to the medication, my endo told me to stop eating gluten because, in his words, "All my grave's patients have sprue." I didn't have insurance to pay for testing and was already pretty maxed with the 300$ for the Endo visits, blood work, and medication I was paying every month! And the payment plan from the hospital for my trip to the ER which ended with a Grave's Diagnosis!
I went GF and was able to absorb my meds and eventually stabilized the thyroid. I ended up with insurance and my new endo (HMO - couldn't keep the old one) decided I needed to have the full celiac blood panel then go on a gluten challenge. I did the blood work - negative of course, but he wanted benchmarks for some reason- and went back on gluten for about 2 weeks before I started getting sick again. I naturally backed off on the gluten, but did try to choke down at least 1 slice of bread a day. What ended it was my Grave's Disease coming out of remission and all the gastro symptoms. HMO wouldn't go for scope, but did do blood work. All values were elevated (but not positive - hadn't been "gluteny" enough during challenge) and doctor said NO MORE gluten for you!
So, I don't have the official gold standard diagnosis, but my records show that I have gluten intolerance that may or may not be related to Grave's Disease.
Wow - long winded! LOL
I became very ill this January and after many tests, I was diagnosis with Celiac Disease. I am still in the learning stage on what I can eat and what will bother me.
I was relieved when I was diagnosed for I finally had a answered to why I was feeling so crappy all the time.
My allergist did blood work looking for antibodies. I thought I had a seafood allergy. Test showed allergies to gluten, soy, nuts and some seafood.
I have always had odd stomach issues, turned red splotchy after some meals and for over a decade suffered from bouts of being tired for no reason. Since going GF I have felt so much better.
Lieutenant Space Monkey
I have had a number of problems over the years and then found out I was anemic. This was very unusual for me. I had a colonoscopy which was negative. My doctor then when down through the mouth and checked out everything from there. He immediately could see that I had celiac disease. He did do the blood work and took a biopsy. It was all confirmed. This was about 4 weeks ago and everything is wild regarding diet, etc. However, I have stuck to a gluten/wheat free diet and do feel much better in this short period of time. I do have my moments but they come and go. I am just so glad that this is in my hands and that I control this situation.
I had been having chronic diarrhea for quite some time. My suspicions were raised when a friend of mine with celiac told me that's how she found out she had it. My doc did a blood test & it was negative, but my white blood cell count was high, meaning he knew I had a allergy to something. He told me to take Claritin. My MIL & friend are celiac & had both tested negative as well. Finally he had me do a stool sample & sent it to a lab that does extensive testing. The gluten anti-bodies were found in there.
I also have Insulin Resistance (aka Metabolic Syndrome or Syndrome X) and Hypothyroid. These issues are common in Celiacs. They are all autoimmune diseases and if you have one, you should probably be tested for the others.
Hope this helps!
I have never had a specific test done - I ended up in the emergency dept. I had a severe migraine that would not go away - my stomach was in spasms. They did a ct scan head only - looking for an anerysm and a spinal tap and i was given demerol and did not relieve the pain - so i was finally given morphine and eventually i went to sleep. The doc\s talked with my husband about ?brain tumor, spinal menegitis... I woke up and i'm 100% positive it was the wheat in my diet---i would always get headaches with wheat, stomach aches -- volatile stools either very loose or no stool x7-10days and cramps and abdominal spasms. They didn't believe that was the cause - i did... so after i left the hospital --i went on a completely wheat free diet and no more pain... I still get headaches but now i know it is related to a motor vehicle accident 4 years ago. This episode in the hospital was 10 years ago. Since then i have had no wheat and yes, i did cheat once in a while and the pain was so severe i thought i'd die =-===so i don't do it any more - cheating is not worth it. At this point i do not see any dr. for this condition.
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All my skin tests were negative.
All my immunoglobulin tests were positive for celiac sprue. My primary care doctor said that if it walked and quacked like a duck, most likely it was a duck. Diagnosis by blood.
That being said, I wish I had the finances to see the GI doctor for a confirmation. But once I rooted out all the gluten containing items in my diet - and I am VERY sensitive - I began feeling so much better.
What has happened since then though is that I have been able to identify the other foods that give me migraines or other reactions pretty easily. Apples, for instance, will provide me with a nice migraine within 5 minutes of the first bite. Tomatoes and peppers do the same thing but slower. Certain over-the-counter medications cause anaphylactic reaction (I now carry an epi-pen).
I had noticed that I felt worse when eating wheat/gluten and even had the doctor change a medication that had a negative indicator when mixed with gluten (that is when my weight loss began). It was then that the blood work was started.
I'm now reading the YEAST CONNECTION book because I suspect this food group is providing me with some challenges as well. My daughter #2 experiences bad yeasty beastie symptoms and maybe I can help her too!
"When you get to the end of your rope, tie a knot and hang on." - Franklin D. Roosevelt (1882-1945)
You can't rely on skin prick tests for food allergies I've read over and over. (When I had mine done years before my CD dx, I was allergic to tomatoes and rubber.)
You can't even rely on blood allergy tests. The best test is elimination diet. If you want a confirmed diagnosis via blood and biopsy for celiac, you need to continue eating gluten until they're done. Sometimes they're negative and people still go gf and feel better, so they stay gf. They're glad to have done the tests. If you feel better gf and try to tell others in your family about it, they might not take you as seriously without a "confirmed" diagnosis from a doctor (ala blood and biopsy). Sometimes it's just good to KNOW KNOW, ya know? ;)
If your doc did an endoscopy, did he/she do biopsies or just take a "look-see" ... it would be a shame to have gone to the trouble of it all if they didn't biopsy anywhere. However, people have come out with negative biopsies and still gone gf and felt better. I don't hear about the people who don't feel much different, but I'm sure they're out there, too.
You might have leaky gut caused by some other means. Read more here: www.leakygut.co.uk . Also, to learn more, read as much as you can before trying the diet. Gluten-Free Living for Dummies is popular.
Your stomach problems ARE suspect. But you might have parasites or candida, too. Symptoms overlap.
GERD: try eating more alkaline vs acid foods at every meal (grains are acidic) - salads are our friends. :) www.itsmyownhealth.com has a list.
I'm glad to hear you're feeling better LORITOT!
Good luck and keep us informed.
Edited by: DOTSLADY at: 3/7/2009 (22:32)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Same here. I'm self-diagnosed too. My blood work were negative. I take gluten/wheat from my diet since Jan.26th & never look back again. I am lot better without it. My GI doctor want to do endoscopy/colonscopy, in order to do that test i need to add wheat in my diet. i really did not want to add back. I am happy without it. So that was my choice.
"Time and health are two precious assets that we don't recognize and appreciate until they have been depleted."
I also did not have the endoscopy, my genetic tests were negative, but nothing else was positive, so I'm Celiac "by elimination diet", according to my dr. I really didn't want to go back on wheat after the month off and the improvement.
I am still not sure I am diagnosed with anything, but I beleive I am gluten intolerant. After feeling badly for the past 6 mo (bloating, constipation, nausea etc) I went through a ton of tests (endoscopy, Celiac blood test, gall bladder tests, abd CT) there was indication of changes in my intestines but it is not celiac so I took myself off gluten 4 days ago, and I have felt substantially better for the last two. I hope it continues and if so then I will assume I am gluten intolerant. It helped me to have found a really good GI doc, who was willing to talk through all of my test results and help to put the plan in place. I hope you find some info for yourself.
I took myself off gluten and felt better right away. All symptoms stopped. I then made a DR appointment for annual physical and added the blood work for celiac.
I put wheat back into my diet a week before. It was brutal. I was miserible, I didn't even want to be with me hours after I ate wheat.
My results came back negative, but as I have heard from a lot of people and my MD, that to really confirm it to get the biopsy. I have not bothered to do so, I do not see a point. I know I am better off w/o wheat gluten.
For your previous test, did they test for celiac or something else? I am not sure, but if they had to test specifically for celiac and did not, then I would not hold that as a valid test?
Edited by: BAILEYS7OF9 at: 3/6/2009 (14:50)
I've been wondering if I'm suffering from Celiac's disease. I had an allergy skin test done a few months ago that showed a sensitivity to wheat so I thought that may point me in the right direction. I have had tummy trouble my whole life. A few months ago I had a colonoscopy and endoscopy performed which only showed I'm suffering from GERD. Should I go to my allergist, primary care doc, gastroenterologist?