Any Way It Is Celiac?

[miko920]

I am hoping somebody can give me an idea if my symptoms could possibly be a resutl of celiac. I have a GI appointment on Friday and would like to request the testing but don't want to sound wacky if my symptoms are not indicative of it. I will give you the shortest story possible. Most symptoms started in Feb/March 2005, approximately 6 month after moving to California from Connecticut, some of them are more recent. They include:

Hair loss (this has been going on the entire period I noted and has taken a serious effect on me)

Constipation (typically go once a week and on the off chance it is more times, it is very loose and/or diarrhea)

Irritable

Dry skin patches between my fingers

Bloating

Headaches (these are more recent, but have had one everyday for the past month and they tend to come in the morning and leave in the evening)

No sex drive

Depressed

I imagine some things could be a result of the other issues and just not feeling good about myself but wanted to give you a full list. Any input on this would be greatly appreciated and if you feel that I am way off track - please say so. I have had SO many blood tests done and all come back "normal" (i.e thyroid, ANA, etc) the only one that came back flagged low was my alkaline phosphatose from my liver panel???

[Ursa Major]

It could be celiac disease, but sounds a lot more like hypothyroidism to me. Do you normally have lower body temperatures than what is considered the average? That would be a good indicator for low functioning thyroid.

[happygirl]

Yes, they could be.

If you want the bloodwork done for Celiac, explicitly ask for the full panel. Print out the list from Dr. Alessio Fasano's webpage (he is a leading Celiac expert at the University of Maryland's Celiac Center). Often, doctors dont run all the tests, which creates problems down the road. Even if he tells you he doesn't think it is Celiac-who cares---you are the patient, and you are asking to have the bloodwork done. It is worth a shot, sometimes docs just don't know much about Celiac.

From the celiaccenter.org website:

What are the recommended blood tests to diagnose celiac disease?

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

The presence of tTG antibodies is highly suggestive of celiac disease, while AGA can be elevated also in cases of wheat allergy.

(the webpage is: Open Original Shared Link

[CarlaB]

Sounds like low thyroid to me. The thyroid tests are not always accurate. Google Dr. Broda Barnes. He pioneered the temperature method of testing thyroid. I started taking over-the-counter glandular thyroid so I didn't have to convince my doctor about the temp. test being accurate. It increased my temps. up to the normal range.

I would still have them do the celiac panel.

[celiacgirls]

I had many of the same symptoms as you but I had no idea I had celiac. I was tested by Enterolab after my daughter was positive.

If your test results are negative, you might want to consider Enterolab because their test is more sensitive and will detect gluten intolerance not just celiac.

I don't know anything about thyroid issues so I don't mean to suggest that isn't the problem.

[miko920]

I had many of the same symptoms as you but I had no idea I had celiac. I was tested by Enterolab after my daughter was positive.

If your test results are negative, you might want to consider Enterolab because their test is more sensitive and will detect gluten intolerance not just celiac.

I don't know anything about thyroid issues so I don't mean to suggest that isn't the problem.

I had many of the same symptoms as you but I had no idea I had celiac. I was tested by Enterolab after my daughter was positive.

If your test results are negative, you might want to consider Enterolab because their test is more sensitive and will detect gluten intolerance not just celiac.

I don't know anything about thyroid issues so I don't mean to suggest that isn't the problem.

Sorry - not sure what I did with that last post. Thanks for all the quick replies. Thyroid was the first thing I ever thought it was but I have had it tested three times since all this started and it always comes back in the normal range. So, I think I will request these tests as I can't imagine it would hurt to see.

[CarlaB]

Sorry - not sure what I did with that last post. Thanks for all the quick replies. Thyroid was the first thing I ever thought it was but I have had it tested three times since all this started and it always comes back in the normal range. So, I think I will request these tests as I can't imagine it would hurt to see.

Be sure to google Dr. Broda Barnes to learn about the temperature method of checking the thyroid.

[Ursa Major]

My tests for thyroid came back negative as well. But I have consistently temperatures that are way, way too low. I charted them for a couple of weeks, and based on that my naturopathic doctor put me on thyroid meds and adrenal meds (I have adrenal burnout as well). Those blood tests for thyroid miss a lot of people with low functioning thyroid. Check this site for more info: Open Original Shared Link

But I have celiac disease as well. So, you should definitely get tested for it as well. It's best to rule out everything.

[georgie]

Thyroid was the first thing I ever thought it was but I have had it tested three times since all this started and it always comes back in the normal range.

Make sure your Dr and lab are using the new ranges for Thyroid. And are you sure they did all the Thyroid tests including Antibodies? A TSH > 2 is considered Hypo these days but some Drs are still using TSH>3 or TSH > 5 as normal. And you can have a normal TSH but loads of Antibodies which means you have autoimmune Thyroid.

I got tested 3 x this year too and each Dr got it wrong until my 4th Dr.

Its been a slow 6 months recovery but starting to feel great now!

[GFBetsy]

I would also ask to have your hormone levels checked. Problems with those can lead to similar problems as well.

[emcmaster]

Those symptoms sound very much like mine, and I have both celiac and hypothyroidism, which are both auto-immune diseases and thus related.

[miko920]

I wanted to write to say that I went to the GI yesterday and he was worthless - not so much in the sense of Celiac because I am not saying I have this, but just overall he was. I did ask him to do the panel just to make sure and he did but he told me there is no way it is celiac because I have gained 3 pounds over the past 6 months (I am 5' 9" and 133 pounds - I am not underweight is where he was going with this) and I am not anemic (although my RBC was slightly low in my most recent bloodwork, but I don't think that alone means anything). I was just curious if everybody who is diagnosed Celiac on this board is both underweight and anemic. Again, I am not saying that I have this, but I just want to see how knowledgeable this doctor is because i have done research that shows he is off base. Is this right?

As for my thyroid, it is usually around 1 -1.3 but I have contacted a naturopathic doctor because I am tired of western medicine. My doctor (PCP) actually told me all my symptoms are because I am getting older and I looked at her like she was nuts and asked her if I was really getting headaches because I am 27 & if I have all these issues at 27, I don't want to see myself at 60 Anyway, she said it must be stress. So I have decided that a different approach with a naturopath will be best. Hopefully she can pinpoint whether it is my thyroid and I can start feeling better.

Thank you all again for your input and I will definitely look into my thyroid. One thing I never mentioned before is a homeopath put me on a wheat free, dairy free diet a while back and it did seem to help my GI symptoms to some extent but since it didn't help my hair within 2 months I stopped (now I realize the hair cycle is 3 months so I didn't give it enough time). Do you think this could mean anything - I am guessing no because it wasn't gluten free. Sorry for this wicked long post!!!

[daffadilly]

your assessment of the doc is correct, he/she is worthless & a total idiot when it comes to celiac disease. back in the dark ages you would only get a diagnosis of celiac if you were on your death bed & losing a pound a day with your ribs poking out & your belly protruding, by then it was too late, the patient died. A lot of times they called it the "wasting disease" if when doing the family genealogy you look at what your early family died of you will probably see it.

you can certainly be celiac and be overweight. I recently worked in an office with a morbidly obese guy & I tried to tell him about celiac - but guess what, his family and his doctor had already given him the info, and he was not interested. He is in his 50's - he will not live much longer... I do not work there any longer, I did not want to be there when he dropped dead at his desk.

The people in my family tend to put on weight & be constipated, although we also have the IBS dx in some of our family, which really does not seem to cause a weight loss in us either.

I can spot someone with celiac instantly, I do not know why the doctors find this so hard to figure out. Geez, you ask a few questions and it is like an open book...

[miko920]

[quote name='daffadilly' date='Nov 12 2006, 12:18 AM' post='232796'

you can certainly be celiac and be overweight.

[georgie]

As for my thyroid, it is usually around 1 -1.3

Mine was too but when I finally found a good Dr she checked my Thyroid Antibodies for Hashimotos and that's what I had. There are good docs out there - you just have to find them

[miko920]

Mine was too but when I finally found a good Dr she checked my Thyroid Antibodies for Hashimotos and that's what I had. There are good docs out there - you just have to find them

Unfortunately with my HMO I am very limited with going to another doctor because they all work for the HMO and read my file and say the same damn thing. This is why I have gone ahead and contacted the naturopathic doctor as she indicated she looks at the thyroid testing in other ways besides TSH (i.e temperature and other blood tests). Hopefully she is able to pinpoint the problem because I am losing my mind - in case you couldn't tell by my attempts to find something wrong!!!

[happygirl]

If you need more information, I highly recommend reading a recent book published by Dr. Peter Green of the Columbia Univ. Celiac Center, called: "Celiac Disease: A hidden epidemic" It discusses many of the related disorders (including thyroid), tells you EVERYTHING about Celiac, and provided so much insight. It was so refreshing to read something by a doctor who acknowledges that the medical community is not treating patients right in regards to celiac. I can't recommend it enough. you can get it on amazon or if your local bookstore doesn't have it, they can order it.

[Guest nini]

in regards to your question about weight, NO you do not have to be underweight and wasting to have Celiac, you also don't have to be overweight either, some Celiacs have NO SYMPTOMS AT ALL, NO WEIGHT PROBLEMS AT ALL, and STILL have Celiac and are only dx'ed because a first degree relative was dx'ed with it and their Dr recommended all first degree relatives be tested. Celiac is a great mystery to so many Dr.s because they are still being taught that A) it's very rare you have to be severely underweight and malnourished to have it C) it only manifests in gastrointestinal symptoms...

the truth is, you can be ANY weight and have Celiac, you can have any number of symptoms, or NO SYMPTOMS AT ALL, and be Celiac, You don't have to have tummy problems to have Celiac...

My personal experience was that I was morbidly obese and since my dx and going gluten-free, I have lost over 100 lbs. My daughter was UNDERWEIGHT and dx'ed failure to thrive, we were BOTH anemic and hypoglycemic. My daughter's bloodwork was negative, mine was highly positive, but we've BOTH improved tremendously on the gluten-free diet. My humble opinion is most Dr.s don't know jack.

[miko920]

I have a question for everybody out there on the reliability of Diagnos-Techs testing. After getting completely fed up with my doctors at Kaiser, I started seeing a naturopathic doctor who specializes in GI issues due to all my problems with my stomach that I noted before (most recently I get sick in the middle of the night for no apparent reason - this is not every night but has happened a few times - and I have had wicked d. for about 1 1/2 weeks). Anyway, the ND ordered a full GI panel from Diagnos- Techs and it came back saying positive for gluten and dairy intolerance. My results for gluten were 37 compared to the labs range of 13-15 borderline and >15 positive - I have no other labs to compare this to so i don't know how reasonable it is. So I would like to hear opinions from everybody on the lab?

I think I may try gluten free only because I am sick of feeling this way and I guess it can't hurt but I would still like people's thoughts.

Finally for everybody who said to check my thyroid, I did the basal body temp at my NDs request and it was 97.7 average - so according to that and my TSH I am fine there but I still haven't had the other blood tests done and can't get my MD to order them, so I am out of options with that.

[Nancym]

I think I may try gluten free only because I am sick of feeling this way and I guess it can't hurt but I would still like people's thoughts.

Your health is definitely in your own hands. You don't need anyone's permission to eliminate gluten, other than your own of course! Give it a month or more if you can. Just see how you feel. To me, the change was nothing but positive. Diagnosis diaschmosis! I am my own diagnostician.

If it is thyroid then getting off gluten might increases the chances it'll go into remission. If it isn't, well you might end up feeling better anyway. What's to lose?

[dionnek]

I gave up on HMO dr's many years ago (Kaiser in particular!) - they are useless as you have found out. It took me 10 different dr's to find my celiac dx (I had never heard of it before dx) - all the dr's said there was definitely something wrong with me but they didn't know what (tested for diabetes insipidus, insulin resistance, cancer, brain tumor - yeah, I actually had an MRI of my brain for this!). I also have Hashimotos though, so it's hard to say what symptoms are from which, but I can tell you that I've been gluten free since dx in May and am still not much better, so you need to give it time on the gluten-free diet. Also, you need to check ALL medications and shampoos/lipsticks, etc. - anything that can get into your mouth (via gluteny hands, utensils, etc.).