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  #1  
Old 01-12-2010, 06:05 PM
smi7ie smi7ie is offline
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Default Gluten Intolerance?

I am new here and I posted before about having multiple problems, but think I should have asked in here regarding some things

I have been diagnosed with Hashimoto's, but I have a array of problems that my specialist cannot tell me are from the Hashimoto's. He stated "I really don't know".

So I have elevated levels of Microsomal Antibodies and Anti Thryroidglobulins
I also recently had a Celiac Panel done everything EXCEPT the Anti-Gliadin IgG was normal.

My IgG was 34
which the range is >30 Moderate to Strong Positive
I also had a IgE of 355.0
normal is <114.0

So my Question is since my doctor doesn't know, and the specialist doesn't know *or want to take the time* to find out.
Do or could I have a Gluten Intolerance?
I have many other problems.
Vision Problems
B12 deficiency
Anemic
Severe Joint Pain in wrist,knees and small bones of feet
Memory Loss
Hypoglycemia
Anxiety Attacks
Hair Loss
Constipation some days
Diarrhea
Dry Skin
Extreme Thirst
Nausea sometimes
Sinus Problems
Asthma


That is about it

Thank you for your time
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  #2  
Old 01-12-2010, 08:20 PM
jcc jcc is offline
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You sound like me (in the past)! I am short on time right now and will get back to you... but meanwhile check out My Story in The Gluten File linked in my signature.

Yes... you have gluten problems. You can also read the pages I have in The Gluten File on diagnostics and gluten sensitivity vs. celiac disease.
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  #3  
Old 01-12-2010, 11:51 PM
annelb annelb is offline
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With a positive IgG - I assume it is the AGA IgG - you are gluten sensitive. You IgE antibodies are also high so that would indicate a true allergy too. It certainly makes sense to do a GF trial. It may make a world of difference in your health. It gave me back my life.

Are the doctors going to do a biopsy? If you are to have a biopsy, wait until after that is done to go gluten free. No matter what the biopsy says, a gluten free trial is worthwhile.

Anne
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Old 01-13-2010, 12:05 AM
Barque Barque is offline
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Hi Smi7, you sound like me.

I was talking about this in another thread, I can't remember which one it was but they told me to go to this thread and I did.

GFP is talking me through changing my diet to Gluten Free. I am on my 5th day and already am experiencing some nice changes in the way I feel. I haven't gone 100% Gluten Free as yet, I have just cut out ALL breads and wheat. Or doing my best to right now. As I progress she asked me to post daily about what I am doing so I am not in the thread until the last few pages. I was just going over there now to make a post. Come over and read. It's really a good thread.
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  #5  
Old 01-13-2010, 09:53 AM
smi7ie smi7ie is offline
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Dear JCC, Thank you very much for the quick response and I found your file quite interesting. I had actually read it after I posted my thread. You have a lot of good information; I cannot thank you enough for sharing it.

Annelb~If this refers to AGA then yes that is what I was referring to when I said "everything EXCEPT the Anti-Gliadin IgG was normal."

No nobody is going to do anything because according to them I don't have CD and most everyone that has allergies like I do will test positive for things like this, so basically I am just ignored like I was regarding my Hashimoto's. If it wasn't for my persistence's my condition would have never been diagnosed. The specialist around here give you 2 minutes if your lucky to speak to them; and that is usually just for them to either hand you a script or say sorry your fine. I spent the better part of 7 years with numerous problems, the biggest was these Anxiety Attacks that the medicines never helped; yet no doctor would listen they just gave me a different med. I just got to the point were I just stopped taking the medicines. Got a good doctor now, but she is really gray on Hashimoto's and things like that, but she figured out that my attacks were actually low blood sugar as I am Hypoglycemic. She will refer me to anyone I want; and I have gone through numerous doctors. I will happily get up and walk out of your office if I am treated as though your time is more valuable than mine. So with that being said my doctor doesn't quite understand the whole Gluten Intolerance, she is doing her own readings now to better understand, but she cannot order the biopsy only a Gastroentrologist *think that is who it is* can, due to my good expensive Health Insurance. They will deny the procedure unless its ordered by the specialist and he said there is no need.

Barque~I am waiting the final decision from my PCP to start either a gluten free or low gluten diet. Either way it will be one or the other. I will be going to read up on your post in a few minutes.

Thank you all for the input. Just wish there was more Listening doctors, if half of them would just listen to their patients they would get the diagnoses from them. But most are lab doctors now and rely heavily on lab results for everything. I am a Phlebotomist, I see the results every single day and I am a prime candidate showing that lab work is not always the truth. I went for 7 years with my condition because they only checked my TSH and T4 and since they were normal, then nothing was wrong. Well after many years and a new symptom of severe joint pain it was discovered that my Thyroid AB were both >500, normal ranges are <40.
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Old 01-13-2010, 01:01 PM
Barque Barque is offline
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I listen to what my body is telling me.
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  #7  
Old 01-13-2010, 01:19 PM
Zonulin Zonulin is offline
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You are right-on that the doctors are not listening and are not willing to order the proper tests to give you some idea of what is going on. For instance, they will not order a lactulose-to-mannitol test to show whether there is intestinal permeability - it's the test used by RESEARCHERS, but the doctors don't see any need for it. It is non-invasive (swallow the sugar drink, collect the urine), but they would rather order a ghastly gastric emptying test instead because (I figure) it costs several thousands of dollars. I found ONE company in the United Kingdom which will do this test for the public - Genova Diagnostics. Weird?

If you google gluten sensitivity gluten intolerance you will find thousands of sites now which discuss the FACT that gluten triggers hundreds of very unpleasant and ultimately deadly health problems. Here is just one: http://www.womentowomen.com/digestio...tolerance.aspx I like to make an analogy that the palm of your hand is gluten sensitivity/intolerance; from that palm radiate the "fingers" of autoimmune diseases such as fibromyalgia, Lupus, Multiple Sclerosis, Celiac, rheumatoid arthritis, etc. And a host of other serious health problems triggered by malabsorption and malnutrition caused by the ingestion of gluten/subsequent leaky gut. But it all emanates from that PALM.

The doctors don't get it because (1) there's no DRUG for them to prescribe, and these days, that's about all they know how to do; and (2) a knowledge of nutrition is required, and they have little to no training in nutrition.

You mentioned your positive Antigliadin IgG antibody test - that is the only test that gave us a clue when my son was skeletal and they were threatening to put him on a feeding tube (test result of 69, with a "normal range of 0 - 20). Yet the gastro insisted Ted did not have a problem with gluten because his biopsies showed no "flattened villi"!! I say skip the stupid biopsy - see whether you feel better on the GF diet. There are only a HANDFUL of doctors out there who get this - Hadjivassiliou, Vodjani, Lewey, Fine.

Yesterday our local paper had a story about a young high school basketball player who was diagnosed with "ulcerative colitis" (he had chronic diarrhea). He was treated at the same "teaching hospital" that my son was referred to for his endoscopy, but this poor boy will not share the happy ending that my son has enjoyed - they gave him a colostomy!!!!! Good Lord - no mention of food intolerances in the article, which makes me very sad/angry. The high-and-mighties are treating these problems the same way they have for decades and are not reading the published literature which has been out there for years. How pathetic.

One of these days people are going to wake up and realize that no pharmacist can tell them how many thousands of side effects can occur from the "average" number of meds they're on: http://www.managedcaremag.com/archiv....snapshot.html and they're going to realize they've been had by the cozy relationship between the medical community and the drug companies...I congratulate you for insisting on the Antigliadin IgG antibody test (which most doctors delete from the "Celiac Panel" test). Here's a test for the doc: ask for a lactulose-to-mannitol test to check for intestinal permeability and see what the response is

Karen
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  #8  
Old 01-13-2010, 02:20 PM
jcc jcc is offline
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Smi~

Antigliadin IgG was also the only clue we had that gluten might be a problem for my family. Two of my daughters were positive. I was not, but I benefited from the diet none the less.

More and more doctors are beginning to understand that gluten sensitivity, even without biopsy proven celiac disease, is associated with many chronic conditions, diseases, and symptoms. Still, even though things are better now than ten years ago in terms of recognition, there is a long long way to go. It is a positive sign that some of the celiac specialists are beginning to acknowledge this truth, but getting it into Main Street, USA, might take another decade or so.

I would agree you might as well skip the biopsy. While up to 20% of biopsy proven celiacs don't show positive anti-tTG or anti-endomysial, the odds are still against you showing biopsy evidence of celiac disease if the only positive antibody was antigliadin IgG. That doesn't mean a gluten free diet isn't for you.

Do you know if they tested you for total IgA? That is one common pitfall in serological testing, because those with IgA deficiency will not test positive to anti-tTG IgA. A positive antigliadin IgA is also more associated with villi damage than antigliadin IgG. But, no matter all that, a positive antigliadin IgG does show gluten sensitivity, and with all of your other symptoms... I think you are one who would benefit from a gluten free diet, no doubt.

Some of your symptoms may be attributable to underlying B12 deficiency (which may be caused by gluten sensitivity, or pernicious anemia, or other reasons). Did you see the B12 deficiency page on that in TGF... way down at the bottom of the right bar? I had many of the same symptoms. Some things improved when I corrected the B12 deficiency. Other things improved a year later when I began a gluten free diet.

Asthma and sinus conditions may indeed improve on a gluten free diet. Casein sensitivity (cow's milk protein) is common in at least half of those with gluten sensitivity, and is also known to contribute asthma, sinus problems, and autoimmune disease.

I was struck by how similar my initial hypothyroid symptoms were to the symptoms of B12 deficiency, although my B12 deficiency were worse... mostly because it took THREE years to be diagnosed with it. Are you treating your B12 deficiency with shots or oral medication? I take oral methylcobalamin, 1000-2000mcg daily.

Please ask if you have other questions that we may be able to help you with.

Cara
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  #9  
Old 01-13-2010, 04:53 PM
smi7ie smi7ie is offline
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Cara

Thank you so much for the information. I was tested for total IgA and it was 219. I am going to go with the GF changes and will keep updating if you wouldn't mind. How are you and your daughters doing? I read some say that they had withdrawls, that is something I am really not looking forward too having if that is the case. Oral B12 just wouldn't work for me, we tried for 6 months and just couldn't get my levels up. Within two months of injections they were above 400. I lost my vial and had to wait due to the insurance to get it refilled so it was almost 6 months without which caused my level to drop down to 199 again. I am back up now and its only been a month, so that is a good thing. I am excited to see how this will hopefully change things. I am a very active person but within the last two years I have really went down hill, especially in with the joint pain. Its unbearable to ride my snowmobile, my favorite thing to do besides be with my family. SO anything I can do to help rid my body of this stuff I am all for. Thanks again for the input. I greatly appreciate it

Leslie
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  #10  
Old 01-13-2010, 06:26 PM
pab pab is offline
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what dose of oral B12, and was it on an empty stomache?
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