roomorganizing

Hi everyone, I've been lurking while waiting to hear about the results of my 1...yes you read that right, 1 test for celiac. It was the anti-endomysial test with reflex.

Finally got the results from the doctor. Normal, of course; rated 5 with lab ranges of 0 to 19.

Also, had my thyroid checked again with this new doc from the endocrinology dept (she's really a NP). She advised me that the TSH - which is what my PCP had ordered - is not a reliable indicator when someone is taking Armour thyroid (which I am, of course).

Obviously - and I say this because of how crappy I feel - my free T4 was low (0.7 with lab ranges of (0.8 to 1.7), so she upped my dosage from 120mcg to 180mcg. I'll start this new dosage tomorrow.

Background: I have had Hashimoto's thyroiditis since a teenager (doc noticed a goiter), had my gallbladder out in 1997, 1 month after having my son (who by the way is autistic), lost both parents while still young - mom was 47 when she died from stroke, dad was 59 when he suffered a heart attack (lifelong sufferer of asthma and lost a ton of weight before he died), my sister has Ige food allergies and was diagnosed last year with Hashimoto's, a daughter with ADD, another son with a learning disability (school casts as autistic, but he is much more capable than my older son - I think because I refused to allow him to get the MMR).

Nobody in my extended family to my knowledge has celiac - or any autoimmune diseases that I know of, but of course we're not really all that close...

Symptoms I've been having: diarrhea/constipation - swings from one to the other - brain fog, inability to focus and concentrate for any length of time, lots of very smelly gas, aching joints, muscle weakness and the new joy in my life - a very itchy rash which I developed after my initial doctor visit back in December, 2012.


Can't think of anything else at this moment, but anyway, if it were illegal to be celiac, I would probably be put away for life due to circumstantial evidence! ;-)

Question is: I plan to try the GFD for at least 3 months' time to see if I begin to feel better. What would you do?

Thanks everyone - this is a very supportive community.

I'm sure you will get responses from some who are much more versed in this disease than I, but I would hedge a bet that they will recommend you request a full  celiac panel be run. I have learned SO MUCH from this forum (and other sites), and one of the things I've read over and over again is that celiac disease and Hashimoto's are very connected. Your symptoms alone would be reason enough for me to push for further testing. Your rash sounds like it could possibly be dermatitis herpetiformis. If you haven't read the posts on that topic, you really should. There are even lots of pictures for you to compare. You could have a skin biopsy done to test for DH, but be sure to read on that so you know where the biopsy is supposed to be taken. If you get a positive result for DH, it's also a positive result for celiac.

Good luck! Keep us updated if you decide on further testing.

Hi, Dgirl! Everyone on this forum knows you are not making things up, but many have been made to feel that way from their docs....and sometimes family. And after so many years, we can begin to wonder if it's all just in our heads, right? Even though we really know it's not....

I can't help you with the GI report language, but I can tell you this part of our story. Our oldest son was 16 at the time of his endoscopy, his only symptoms (that we realized at the time) were short stature and delayed puberty. Never any digestive issues. The GI doc spoke with me immediately after the procedure and said that VISUALLY, everything looked normal, but they had taken several biopsies. And the biopsies are where they found that he did indeed have celiac. We went gluten-free with him and he grew over 7 inches in less than 2 years!

I hate to say it, but I think it's a relief for many to get a diagnosis of celiac disease. Those two words can explain YEARS of pain, lots of doctor visits, and many misdiagnoses. I hate that this disease is unfamiliar to so many doctors, but it's the root of so many diseases and ailments that are -- and those familiar ailments are the ones that get treated while the real culprit goes undetected.

Hang in there and continue to be your own advocate. I think you could be on the right track!

MO, I know. Me too. And if I weren't absolutely, positively sure that I am NOT getting gluten anywhere then I would be thinking that I had gotten cc'd. But this is what this stuff does.
If the docs say you're getting gluten from somewhere then ask them to do a celiac blood panel on you. If it comes up positive they are right ---- negative & they'll shut up.
Like you, the cooking....... it seems the hubs & my life centers each day around what's for breakfast, lunch, dinner. If we want to go anywhere it's all got to be planned around time to be home to cook our next meal which means we don't get much time out at all. We are trying to house hunt & it's damned hard to schedule showings around our cooking & eating. Someone always wants to make the showing around 10 or 11 b/c of their schedule & we have to worry if we will have time to see the place & drive back home. We do take snacks with us but still.......

Watch those band aids ..... they can cause dh places to form. I use them very judiciously these days. Hubs can't have a band aid on him anywhere.

squirmmy, I've never heard this.....can you tell me a bit more? I've posted a couple of times in the last few days about my daughter having a "dry spot" on the back of her knee a couple weeks ago. She put a bandaid over it to keep from scratching and for her jeans not to rub. Two days later, the whole back of her knee was red and raw and itchy, so I told her to leave the bandaids off and to use antibiotic cream on it. It started to heal, but then she had more blisters appear down her leg. Now they look like large sores that have scabbed over. I'm intrigued by the bandaid thang!

Visible does not mean active, I'm afraid. If they are not driving her crazy they are probably not active If you want a positive result you should discontinue the AB's, and yes, eat gluten and try to stir things up a bit. You do know it is important that the testing is done on the skin immediately adjacent to a lesion, right? and not on the lesion itself.

Thank you, Mushroom! Yes, I do know about the testing site and mentioned it to the PA. He reacted as if he was already aware. If her skin continues to clear and she has no further spots crop up, I may cancel the appointment and wait for another outbreak. No need to make her go through the procedure twice....and I wonder if they would even do another biopsy if the first one comes out negative?? Stopping the antibiotics today!

I totally understand how you could relate every symptom to gluten! After reading hundreds of posts and stories on this forum as well as dozens and dozens of medical articles, I have come to understand that celiac disease can be the ROOT of so many other conditions and symptoms. And it can be so frustrating when most doctors want to treat superficially and only what they see on the surface. We were fortunate with our oldest son -- our primary care physician was in the early stages of TRULY learning about celiac when I took our 16-yr-old for his physical. He was 5'3", in the 10th percentile of his peers, was not growing, had delayed puberty, but no other symptoms (that we recognized at the time). My concern was the short stature (pituitary? thyroid? just the card he was dealt?). Our doc wanted to run blood work, but emphasized that he was ordering a celiac panel. Tests showed tTg of 70 (<20 negative), so endoscopy was ordered. The GI doc said visually everything looked normal -- but the biopsies came back positive. We immediately went gluten-free with him and he grew over 7 inches in less than two years!

In the last two weeks, our daughter has presented with itchy blisters on her legs that broke open, got progressively larger and more angry looking, and now look like open sores. Of course, our new doc (we moved last summer), says it may be impetigo. I insisted that she be tested for DH, but he wanted to give it a week of treatment and go from there. I said I didn't want to wait a week. So we are moving ahead with the antibiotics in case they are infected, and I take her back in in a few days for the skin biopsy. Personally, with our family history, I prefer to rule out celiac before we run the gamut of every other condition it COULD BE! He was not as convinced, obviously, but reluctantly agreed to what I wanted.

That's a long story just to say "go with your gut!" Even with just a little bit of research on celiac disease, it's hard to not to see every symptom as related. I share your obsession Happy!