Hi,

I read your post and it was somewhat similar to what I went through. I went hyperthyroid in 99 and took PTU for it with no problems. I went off the meds and every so often (usually under stress) the hyper symptoms would come back. I would just go back on the meds for a couple weeks and symptoms would go away. 3 years later I quit smoking...symptoms returned that very month. Meds wouldn't relieve symptoms this time. I ended up having radioactive iodine and went Hypo..by now I'm feeling horrible and off work. Start taking levothroid....2 months later labs look good. My Endo says everything is "fixed". I'm feeling worse than ever. Hair has been falling out for months now and I've got tons of other symptoms...still can't work. 2 years go by feeling like this and only getting worse. The whole time I'm adjusting thyroid meds, switching brands, anything to get back to normal. Tried T4/T3 combo, Armour..splitting doses...I tried everything. No matter what I do my symptoms dont change. I end up crying almost everyday...depression is severe and concentration/memory are non-exsitent.
I'm thinking..I was perfectly fine until I quit somking...what the heck?? This is not suppossed to happen.

Finally in April I hit rock bottom...cant even get out of bed. Doctors arent helping. I took matters into my own hands and went on candida diet. All my symptoms improved within 1 week. It was like a miracle..depression was completely gone. I stayed on this diet 4 months thinking I had candida. My symptoms started coming back..then I'd get better...then my hair would fall out...then it would stop again. It was a rollercoaster.

My HMO sucks and werent helping me at all. By now they think I'm nuts cuz I'm saying I have candida and am improving on my diet. They say its placebo effect ...go see a shrink...blah..blah..blah.
They had already ran every test imagineable (so they say) and all is normal. I've had MRI, CT scans, x-rays, Barium, bloodwork...all kinds over 3 years. All is normal.

I decided to pay out of pocket to get a bunch of tests run and try to figure it out myself. I test negative for candida and everything else I ordered except one test came back positive. I tested positive for Celiac Disease. Another autoimmune disease. I have gluten intolerance. Now I find out its highly associated with thyroid disease and all those with autoimmune thyroid should be checked for celiac. Celiac is very common...only the docs dont test for it. Celiac was probably the cause of my Graves disease. Now I learn that celiac causes autoimmune diseases and a gluten-free diet will many times correct other autoimmune conditions such as thyroid. Too late for me cuz I've had RAI.

I got better on my candida diet cuz I'd stopped eating grains...it was no placebo effect. It was a rollercoaster with my symptoms because gluten was in some of my supplements and various other items in the house.
I only got this diagnosis 4 weeks ago.

NOW I find out that smoking "protects" people from symptoms of the disease.
Smoking delays diagnosis and allows progression of Celiac. Quitting will bring about a reduction in general health which will persist until the underlying cause (gluten) is diagnosed and treated. I bring this up to my GI doc...he says "Well...which is the lesser of the 2 evils?" I say "I'd rather have Celiac now than lung cancer later."
Thats all fine and dandy and I'm glad I quit smoking...but shouldn't someone, in the 3 years I was sick, have brought up this disease and tested me appropriately? Statistics say 43% of the poulation carry the genes for Celiac...these genes can be activated at any time in life. Celiac is associated with all other autoimmune diseases...particularly thyroid disease.
I'm curious...how many people here have been tested for Celiac...anyone?
I say...if you have ongoing problems...labs are normal...and med change doesnt "fix" problem...get tested for celiac.
-Rachel

wow! I'm so sorry for what you went through.. and how very strong you are to keep looking and fighting. I bet your story helps others check things out before they get that bad.

Well thats what I'm hoping.

Sunshne24 that is an amazing story. So were you actually hyperthyroid or is that a symptom of celiac?

I have mvp that is associated with autoimmune disorders, now I'm hypothyroid. I had some food testing and I had IgG antibodies to most grains, except corn. My doctor said he didn't think I had celiac disease. Now, I'm wondering.

Nawchem,

I really was Hyperthyroid. I had the symptoms and the tests proved Graves Disease. I just don't know which disease came first. Autoimmune diseases often "piggyback" each other. People often have more than just one.

After all the research I've done logic is telling me Celiac probably occured first.

Statistics say 43% of Americans carry the genes for Celiac. Not everyone *gets* celiac though...the genes have to be "triggered". 1 in 133 people *do* get Celiac and most are undiagnosed. Symptoms vary greatly so it makes the disease sometimes hard to recognize. Its not like thyroid which most people get the same symptoms. Half of the diagnosed celiacs have NO symptoms whatsoever. These people were only tested because of the genetic factor...someone in their family had it. If Celiac can be active years before symptoms appear I'm thinking I probably had it for awhile with no symptoms and it probably caused the Graves Disease.

Celiac causes numerous different autoimmune diseases, osteoporosis, anemia, cancer...the list goes on. Its very serious if left undiagnosed.

My doctor told me I probably didn't have it because I didn't have diarreah. I had every symptom EXCEPT diarreah...so therefore I probably didn't have celiac. He also has never diagnosed ANYONE with celiac....never TESTED anyone for celiac and did not even know HOW to order the tests for celiac.

He did attempt to test me but ordered the wrong tests..I was already trying the gluten-free diet at the time and he said it was OK for me to not eat gluten and then get tested. He finally managed to order 2 out of the 5 celiac tests after I'd been off gluten for 2 weeks. My test was neg....I was told I didn't have it and "just eat lots of food cuz you're too skinny." Well I almost died after 3 months back on gluten.

One year after my tests I find out you HAVE to be eating gluten everyday for 3 months prior to testing. Going on a gluten free diet even a few days before tests can give a false negative. Then I find out you need all 5 tests (celiac panel) in order to get a full picture. Then I find out constipation is actually MORE common in celiacs than diarreah. I had constipation.

Now I know...always do the research yourself and never take a doctors word for anything. Also false negatives are very common with celiac testing anyways but especially if you arent eating gluten.

I thought I must have the worst doctors in the world until I visited the celiac message board and found out the ones who had good doctors are few and far between.

Another thing...some doctors will say you have to be underweight and malnourished to be celiac. Not true. There are no rules and more celiacs are overweight than underweight. Some have no symptoms...some have numerous symptoms.

Here is a link:
http://www.gluten.net/celiac.html

-Rachel

Wow I have an friend with celiac that said he had so many tests that were negative he eventually thought he was crazy but his wife researched it and thought it was celiac and he tested positive for it.

Thanks for the link although I shudder to think I would have anything else.

Sushne 24,
Welcome and thanks for joining our thread. Your post is so interesting to me. I have had a similar experience with the gluten intolerance. About 3 years ago, I developed bad excema on the underside of my arms. I went on Atkin's 6 months ago, and I didn't eat any wheat for 3 months. All the excema completely vanished. It still hasn't returned. I also have noticed that if go to the bagel shop, afterwards I will feel real tired and crappy, and also my thinking will be foggy. I sort of laughed when you said they told you to go to a psychiatrist. I wonder how many people have heard that? I have. I have interstitial cystitis, a bladder condition, and when I first came down with that and was trying to get diagnosed, I heard that a lot. Also, the body is a whole system, and one failing system affects another system. Where has it been said that if you have more than one disease that makes you a hypochondriac? I know most people don't understand what I'm going through, and now that my hair has come back I look completely healthy, sort of fat, but healthy. Sorry to vent guys.

I've been slightly suspicious I might have celiac. I think I'll get that test done.

Sunshine, did you get the test done yourself, or through your HMO? If yourself, where did you order the test?

Nancy,

I originally got the tests taken last Oct. from my HMO. I had asked my doc to test me but he was clueless and told me it was ok to not eat gluten at the time of testing. I had already been experimenting with the diet for a couple weeks before I took the test. He also didn't order all the proper tests so I got short-changed there as well. I was feeling better not eating gluten but the test came back negative so I thought I didnt have it and went back to eating gluten until I was bed-ridden in April.

It wasnt until August that I found out that you have to be eating gluten constantly before testing so my results were unreliable. I couldn't get retested through my HMO cuz I'd been on the candida diet 4 months and was only getting small amounts of gluten in me from my supplements. Not enough to come back positive in a bloodtest. The people on the Celiac message board told me of one lab that tests for gluten sensitivities in the stool rather than blood. Supposedly the antibodies are short-lived in the bloodstream and it takes alot of gluten for the antibodies to appear in the blood. Thats why there are lots of false negatives when testing for celiac. Also symptoms may appear long before a test will show up positive. By the time a bloodtest is positive there is likely lots of damage done to the intestines.

They said the antibodies appear first in the intestines where the damage is most occuring and they will still be present in stool for months after someone stops eating gluten. I took the stool tests and was positive for all the tests. They don't "officially" diagnose celiac because they only provide lab results and really the only official diagnosis comes after a positive biopsy of the small intestine.

I'm scheduled for the biopsy on the 3rd but the GI said it will likely be negative because I'm not eating gluten for 5 months now. He said improvement of all symptoms from the diet is diagnosis in itself. I still want it on the books but that probably wont happen unless I'm willing to poison myself for the tests...which I'm not.

Here is a link to the lab I used and there is tons of useful information on this site.
http://www.enterolab.com/

Also...I had all my Hypo symptoms even when I was taking 3 grains of Armour and my numbers were off the charts Hyper. I thought maybe I had thyroid hormone resistance and the meds just werent working.

Once I stopped eating gluten almost immediately my body temp went up and Hypo symptoms went away. I think it might've been an issue of malabsorption. Maybe the meds weren't getting absorbed...I know much of my food wasnt getting absorbed.

I've been on the same dose of Armour for months now and labs are fine. Now that I got diagnosed and eliminated ALL sources of gluten my T4 and T3 are creeping up...my TSH is showing hyper but I feel good. My Endo said ince T4 and T3 are still in normal range...barely...we will leave it alone for now. He said as my intestines heal and absorb more we will need to decrease the dose.

-Rachel

I sent your information to my Mom. Looking at the symptoms, this is something she might want to be tested for.

BTW got T3 back today with the new Dr. Now I'm very confused.

TSH: 3.65 (range .5-6.0)
Free T4: 0.57 (range 0.75-1.54)
Free T3: 185 (range 230-420)

Does this mean I cut back too quickly on meds? Now everything except TSH is low LOL. Sad thing is I still have the palpitations (although they are much better from 2 weeks ago) so I assumed that was the T3.. but if the T3 is now low how can that be? I'm perplexed.

Yeah, that TSH is too high.

Sometimes people have paradoxical effects. For instance, I gained weight when I was hyperthyroid. My sister sweats and gets too hot and her thyroid is low.

You definitely want to follow this up with your doctor. Maybe it isn't the thyroid meds causing the heart beat irregularities.

Sunshine, Which test did you have done? I'm not sure whether to go for the real expensive ones or the cheapie that detects TGa.

Kharma maybe your caught in the vicious cycle. From what I've been told sometimes you get heart symptoms your body pours out stress hormones and the stress hormones perpetuate the heart symptom. When I increased my med I caught the palps, but they didn't go away when I quit taking it. Eventually I started taking phosphatidyl serine-it helps you deal with cortisol, I also cut out all stimulants and additives from my diet- no: AS, msg, caffeine, chocolate just plain meat and fresh vegetables and I got lots of sleep. It took 2 solid weeks for the palpitations to fade away. The palps can originate from your nervous system getting too cranked up. Here is one perspective on palpitations from stress.

http://www.lifespa.com/article.asp?art_id=28

The bloodtests are called the celiac panel.

The complete blood panel for celiac consists of the following:
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA

Most docs fail to order all the tests...the last one is important cuz some people are IgA deficient and therefore will test negative regardless. The total Serum IgA detects IgA deficiency.

When I had bloodtests I only had the Antigliadin IgA and the (tTG) IgA.
They were both negative at that time.

The stool tests I had done last month were for again for Antigliadin IgA and (tTG) IgA.
This time they were both positive.

The tTG and EMA tests are the two tests that are *highly* specific for celiac...if either of these were positive you would likely have celiac. If the IgA or IgG tests were positive without the others being positive you could still
have celiac but probably no intestinal damage yet. Or you could be gluten intolerant without having celiac which means you still cant eat gluten. Basically if any of the tests are positive it means you're immune system has mounted an autoimmune response to gluten and it is not a good thing for your over-all health.
The tTG test is very specific for damage occuring due to gluten consumption.

My blood tests were covered by insurance.

My stool tests were not since they were done at an outside lab. Its the only lab I believe that does the stool test so there was no choice there. It cost me $350 but I had gene testing done as well. I think it would have been closer to $200 w/out the gene test.

-Rachel

Thanks Rachel, yeah, so you went for the full blown test that is over $300. Did the gene test come out as positive?