Doc Says I'm Gluten Intolerant... But I'm Not Sure?!

[tygwyn]

Firstly.... HI EVERYONE! Glad to have found this forum

Heres my story...

I've recently visited a new doctor who came highly recommended to me as he deals with hormone imbalances and thyroid disease. I am Hypothyroid (thyroid was removed 3 years ago) and so I really wanted someone to sort me out!! I have been feeling extremely unbalanced for 4 years now.... lots of anxiety (and I mean LOTS), inability to exercise without becoming extremely breathless and heart racing like crazy etc etc. Very irritable, moody etc etc - diarrhea (sorry not sure how to spell it) every morning without fail during all that time.

Anyway I was convinced that all of my symptoms were down to thyroid and adrenal issues. But the bloods I had today also indicate insulin resistance, and apparently gluten intolerance. The insulin resistance is pretty straight forward as my levels are within the range for that, but the gluten intolerance I just don't get. The only reason that I question it really is that I have a feeling this doctor just wants EVERYONE to be gluten free!! - if this is my problem, then fine, I'll deal with it and would be absolutely over the moon if I was to discover that this has been my problem all these years... but I don't want to pin my hopes on it. So... could those of you in the know please tell me what you think of these results - to me they look fine... but to him, not so much!

Gliadin IgA Abs: 6 U/mL (0-20)

Gliadin IgG Abs: 5 U/mL (0-20)

tTG IgA/IgG: 4 U/mL (0-20)

Thanks in advance everyone... really appreciate any advise you can offer

Rachelle

[KathiSharpe]

The reason I'm going back to gluten-free - regardless of whether I ever get a diagnosis - is because my thyroid and hormones have spun completely out of control and no one can tell me why. It only did that after I returned to eating gluten after the doc told me I didn't have celiac disease. In the process I've gained 80lbs

My research is showing links between gluten intolerance (in its many forms) and thyroid disease.

[tygwyn]

Thanks Kathi

Yes I've heard many times of the connection between thyroid and gluten intolerance... it seems thyroid goes in hand with lots of things!!

My concern at the moment is weather or not my doctor really believes that 'I' have gluten intolerance, or if he believes 'EVERYONE' does! I would absolutely love it if I found the answer to all my troubles... but I'm not convinced given the blood results.

The reason I'm going back to gluten-free - regardless of whether I ever get a diagnosis - is because my thyroid and hormones have spun completely out of control and no one can tell me why. It only did that after I returned to eating gluten after the doc told me I didn't have celiac disease. In the process I've gained 80lbs

My research is showing links between gluten intolerance (in its many forms) and thyroid disease.

[Jestgar]

Your diet is your choice. Does it really matter if he believes you?

[tygwyn]

Its not a case of 'him' believing 'me', its the other way around. I cant see anything in my bloods which indicates a problem, but that is what he is using to diagnose me. I feel he may just want all of his patients to be gluten free. My question is, can anyone else see a problem with these results?

Your diet is your choice. Does it really matter if he believes you?

[ravenwoodglass]

Its not a case of 'him' believing 'me', its the other way around. I cant see anything in my bloods which indicates a problem, but that is what he is using to diagnose me. I feel he may just want all of his patients to be gluten free. My question is, can anyone else see a problem with these results?

When a test is positive then it is positive in most cases. Your doctor is also taking into consideration your symptoms which are suggestive of celiac. Even with negative test results you should give the diet a good shot as false negatives are not uncommon. It also sounds from your description like you may have ataxia which causes issues with balance. Ataxia if it goes on for too long because of continued gluten consumption can fail to resolve completely. Not trying to scare you I just don't want to see anyone else end up with permanent impact. I would listen to your doctor and get on the diet strictly. You may be surprised how much relief you get from all the issues you mention.

[KathiSharpe]

Its not a case of 'him' believing 'me', its the other way around. I cant see anything in my bloods which indicates a problem, but that is what he is using to diagnose me. I feel he may just want all of his patients to be gluten free. My question is, can anyone else see a problem with these results?

Here's a question for you - what's stopping you from going completely gluten-free for, say, six months - just to see if it helps your symptoms?

If your only reasoning is not trusting the doctor, why not ask for a second opinion - get a referral to a GI who specializes in gluten-related troubles?

Or, would it hurt just to humor him and give it the ol' college try?

I think it's fair to say that most people with celiac or gluten intolerance will see a reduction or even cessation of symptoms in that time frame, as long as they follow a strict diet. I think it's also fair to say that most people who do not have celiac or gluten intolerance will see little to no change in symptoms over the same time period. In other words, if gluten is your problem and you completely remove it, you should see some sort of tangible change. If it's not, you won't. (someone correct me if my logic is wrong, please).

[tygwyn]

I think my worry is about getting my hopes up... only for them to be dashed again! I am more than happy to try ANYTHING in the hope that 'my old self' will return... I'm sure you all know how I feel

[ang1e0251]

I certainly understand about getting your hopes up. But, really, what have you got to lose? The diet is pretty straightforward and your body will give you answers one way or another. I found within 3 days I saw signs of a positive dietary response. Other people take longer but still I think it's a valid point that a few months should be a good enough test. Can't hurt, might help!

[Roda]

Firstly.... HI EVERYONE! Glad to have found this forum

Heres my story...

I've recently visited a new doctor who came highly recommended to me as he deals with hormone imbalances and thyroid disease. I am Hypothyroid (thyroid was removed 3 years ago) and so I really wanted someone to sort me out!! I have been feeling extremely unbalanced for 4 years now.... lots of anxiety (and I mean LOTS), inability to exercise without becoming extremely breathless and heart racing like crazy etc etc. Very irritable, moody etc etc - diarrhea (sorry not sure how to spell it) every morning without fail during all that time.

Anyway I was convinced that all of my symptoms were down to thyroid and adrenal issues. But the bloods I had today also indicate insulin resistance, and apparently gluten intolerance. The insulin resistance is pretty straight forward as my levels are within the range for that, but the gluten intolerance I just don't get. The only reason that I question it really is that I have a feeling this doctor just wants EVERYONE to be gluten free!! - if this is my problem, then fine, I'll deal with it and would be absolutely over the moon if I was to discover that this has been my problem all these years... but I don't want to pin my hopes on it. So... could those of you in the know please tell me what you think of these results - to me they look fine... but to him, not so much!

Gliadin IgA Abs: 6 U/mL (0-20)

Gliadin IgG Abs: 5 U/mL (0-20)

tTG IgA/IgG: 4 U/mL (0-20)

Thanks in advance everyone... really appreciate any advise you can offer

Rachelle

[/quot

Your symptoms could be related to iron deficiency. You should get specific iron tests done. You can be symptomatic even if your hemaglobin/hematocrit are normal. This is the problem I am having now.(having the same symptoms as you) I am looking at needing an iron infusion since my levels have been so low for over three years now. I feel better gluten free but since the iron deficiency has persisted, I still have issues. Get your vit b12, folic acid, and vit d checked too.

[tygwyn]

Thanks everyone for taking the time to respond. Really appreciate it. You're all right... I should just give it a go and see what comes out of it. What I was hoping for was for someone to say 'OH MY WORD.. YES THATS A PRETTY SERIOUS CASE YOU HAVE THERE... YOU DEFINITELY NEED TO BE GLUTEN FREE'... then I would have been happy! How sad is that?? I'm desperate for someone to confirm that I have an illness! Oh well, you all get me so thats fine!

The doc has also put me on loads of supplements which is good too.

My main concern with this doc (only 2nd time I've seen him) is that he didn't remember anything that I'd told him on my first visit.. literally nothing... so he wouldn't even have known about the symptoms I mentioned because we didnt get to discuss it. He just looked at the results and said 'you are Gluten Intolerant'. Mmmmm very odd. I should laugh really. He told me his plan was to try to wean me off all medication. When I said to him that I will be on thyroid medication for life he said 'who told you that?'...my response... 'well I dont have a thyroid remember' lol

The good thing is that his plan is to get me back to full health. If he believes that everyone whos healthy is gluten free... then lets give it a go

[tygwyn]

Your symptoms could be related to iron deficiency. You should get specific iron tests done. You can be symptomatic even if your hemaglobin/hematocrit are normal. This is the problem I am having now.(having the same symptoms as you) I am looking at needing an iron infusion since my levels have been so low for over three years now. I feel better gluten free but since the iron deficiency has persisted, I still have issues. Get your vit b12, folic acid, and vit d checked too.

Thanks Roda. My ferritin was low at one point but after being on elemental iron for 6 months its all good now. My b12 and vit d was fine when last checked too.

[tygwyn]

When a test is positive then it is positive in most cases. Your doctor is also taking into consideration your symptoms which are suggestive of celiac. Even with negative test results you should give the diet a good shot as false negatives are not uncommon. It also sounds from your description like you may have ataxia which causes issues with balance. Ataxia if it goes on for too long because of continued gluten consumption can fail to resolve completely. Not trying to scare you I just don't want to see anyone else end up with permanent impact. I would listen to your doctor and get on the diet strictly. You may be surprised how much relief you get from all the issues you mention.

Thanks for the reply. After reading your signature, I know what I have to do... give this thing a shot! Amazing how this can effect us. I'm stunned!

Think I may have confused people with my 'unbalanced' statement. I actually meant unbalanced as in emotionally rather than literally losing my balance. I just feel like something is out of whack.. that peaceful nice I remember (vaguely, but still remember) seems to have left me... AND I WANT IT BACK!!

[tygwyn]

After reading through some of the threads here, I've noticed that apparently before a biopsy you need to have been eating lots of gluten. Is that true for blood tests too? I wasn't even aware of what had gluten in it or didn't prior to the test, plus I was tested for glucose/insulin at the same time so had to fast for 12 hours prior to testing. Would this have effected the results at all?

[evo123]

I had a negative blood test for celiac but a positive biopsy. It would probably benefit you to have a biopsy but if you cannot get one then a trial of a gluten free diet can only assist in the elimination or confirmation of a diagnosis.

[tygwyn]

Thanks evo

You are all right. I have nothing to lose by trying gluten free, so I'm going to give it a shot! Why I feel that I have to justify it by having a diagnosis I have no idea! I think its because I feel people see me as some sort of hypachondriac, but I'm not like that at all... I just want the 'OLD ME' back!

I've just been speaking to a friend of mine too whos 9 year old daughter has just been diagnosed with ADHD - when looking through the symptoms here it matches her amazingly... so, shes also going to look into Gluten Free for her family!

I'm off shopping with hubby this evening so we can stock the cupboards full of Gluten Free food

I had a negative blood test for celiac but a positive biopsy. It would probably benefit you to have a biopsy but if you cannot get one then a trial of a gluten free diet can only assist in the elimination or confirmation of a diagnosis.

[rubyred]

Hi there! Wow, that is kinda weird that your doc looked at your results and came to that conclusion. I'm all for people listening to their body and doing what they think is right for them....but as far as I can tell, your blood work looks negative. That being said, I had negative blood work too. I also had a negative biopsy (well there was damage and inflammation but apparently not damage suggestive of celiac). I went gluten-free anyway because my symptoms were getting so bad, I just had to try something. Well, when I am 100% gluten-free, plus soy and dairy free, I feel great!! I may or may not have more intolerances (trying to figure it out- so frustrating!!).....but point is, I literally saw a 180 difference within one day of going gluten-free in the beginning. I could DEFINITELY tell! So my advice, give the diet a try...........or if you want to continue with the testing for celiac, schedule an endoscopy while eating gluten. Either way, good luck to you!!! I hope you find your answer......I know exactly how you feel about wanting an answer, even if that means you are diagnosed with a disease.

[tygwyn]

Thanks rubyred

Yes I'm pretty sure my doc just classes everyone as Gluten Intolerant, irrespective of the test results. But, if it fixes me then its all good I guess! I really need to get my head around this though because my eating habbits are pretty shocking! Need to start planning more I guess!

Glad to hear the change went well for you!

Hi there! Wow, that is kinda weird that your doc looked at your results and came to that conclusion. I'm all for people listening to their body and doing what they think is right for them....but as far as I can tell, your blood work looks negative. That being said, I had negative blood work too. I also had a negative biopsy (well there was damage and inflammation but apparently not damage suggestive of celiac). I went gluten-free anyway because my symptoms were getting so bad, I just had to try something. Well, when I am 100% gluten-free, plus soy and dairy free, I feel great!! I may or may not have more intolerances (trying to figure it out- so frustrating!!).....but point is, I literally saw a 180 difference within one day of going gluten-free in the beginning. I could DEFINITELY tell! So my advice, give the diet a try...........or if you want to continue with the testing for celiac, schedule an endoscopy while eating gluten. Either way, good luck to you!!! I hope you find your answer......I know exactly how you feel about wanting an answer, even if that means you are diagnosed with a disease.

[Takala]

Gluten intolerance is, to some researchers, just a case of celiac that has not gone full blown yet and instead the body went after the thyroid and other body parts first, like the brain, bones, kidneys, liver, ovaries (cysts, PCOS) etc.

Because of your other problems, the doc probably pinned you as very likely gluten intolerant, inspite of the lackluster numbers, because both thyroid auto immune disease and diabetes are associated with the same genes that cause celiac/gluten intolerance. (and they just are discovering things like this besides the statistic of an increased liklihood of them being present in the same people)

Gluten intolerance causes problems with the absorption of the B vitamins, lack of which tend to make people anxious, also with the body's use of calcium, magnesium, which can royally screw up your reproductive hormones. Once you get supplemented up and stop the auto immune reaction in your body by adhering to what diet you were meant to live on, this should make you feel much better. You will also probably end up needing your levels of thyroid hormones adjusted and make sure all your medications and supplements are gluten free.

[tygwyn]

What a great reply.. and you are absolutely spot on with everything you said. Before my results came back my doc said 'you're gluten intolerant and I'll do a test to prove that'... he then said, and becasue of your previous Hashimotos and Gluten Intolerance, you are at risk of Insulin Resistance... spot on! He also said that as the supplements kick in, (I started multi B Vit yesterdy, and I'm almost scared to say this, but I think I already feel a difference!) and I've got a hoard more due to arrive next week, hes hoping to wean me off Hydrocortisone (which I'm taking for exhausted Adrenals) and said it is VERY likely that my thyroid meds will reduce. At the moment I keep ramping up my thyroid meds and its making no difference whatsover... I feel no different now that I'm on 180mg thyroid, to how I felt on 90mg. Doc says this is because my body is not absorbing the nutrients, and so it cant do its job with the thyroid meds... so its not getting to the cells. Hes not concerned about the insulin resistance at the moment as he believes that the Gluten Free diet, and the supplements will fix that.

I saw a previous thryoid specialist who also told me to go Gluten Free, and said that testing for it is pointless because the tests are so unreliable. Sadly I chose not to take her advise... this time I will!

There are so many twists and turns to this arent there?

Thanks for your reply - I really needed you to put that all back in my head. I had the negative stuck in my head that he was just a doctor who believed in Gluten Free, but you're right... hes linked that to all of my other conditions.

Gluten intolerance is, to some researchers, just a case of celiac that has not gone full blown yet and instead the body went after the thyroid and other body parts first, like the brain, bones, kidneys, liver, ovaries (cysts, PCOS) etc.

Because of your other problems, the doc probably pinned you as very likely gluten intolerant, inspite of the lackluster numbers, because both thyroid auto immune disease and diabetes are associated with the same genes that cause celiac/gluten intolerance. (and they just are discovering things like this besides the statistic of an increased liklihood of them being present in the same people)

Gluten intolerance causes problems with the absorption of the B vitamins, lack of which tend to make people anxious, also with the body's use of calcium, magnesium, which can royally screw up your reproductive hormones. Once you get supplemented up and stop the auto immune reaction in your body by adhering to what diet you were meant to live on, this should make you feel much better. You will also probably end up needing your levels of thyroid hormones adjusted and make sure all your medications and supplements are gluten free.

[nora-n]

tygvin, what are your total IgA numbers? If they are high, the results are skewed, if they are low, the results are skewed too.

What are your vitamin D and b-12 levels, and are you anemic? Vitamin D is usually low in celiac since fat absorption is faulty.

[tygwyn]

Hi Nora

The only tests I've had done are the 3 that I've quoted... I'm so new to all this sorry that I dont know what any of those mean? Is the tTG IgA the total??

I didnt have my Vit D & B12 done this time but last time they were done was in the middle of summer (Jan this year.. I'm in Australia) and they were:

Vit B12: 308 pmol/L (145-637)

Vit D: 94 nmol/L (51-140)

I showed these to the new doc and he said they were ok but would expect the Vit D to be a lot lower now (given that its the middle of winter).

I also take 2 x 600mg calcium per day. These tablets contain 200iu Vitamin D3 to help with the Calcium absorption - I was taking these at the time of the Vit D test (if this makes any difference?!!)

Thanks for taking the time to reply - really appreciate it!

Rachelle

tygvin, what are your total IgA numbers? If they are high, the results are skewed, if they are low, the results are skewed too.

What are your vitamin D and b-12 levels, and are you anemic? Vitamin D is usually low in celiac since fat absorption is faulty.

[nora-n]

Winter now where you live...

Those numbers would be influenced by the calcium and vitamin D. do you usually get some sunshine? I guess then the body makes vitamin D that goes though the skin and omits the intestinal tract....

The total IgA is either called Total IgA or IgA or something like that. It is absolutely important that this is done when IgA type tests are done. Just to check if the tests are valid.

Have you seen Dr. Ford's website? google Ford gluten and you find him in NZ. He feels gluten intolerance is important too and they offer antigliadin IgG tests which often go positive a long time earlier than the ttg IgA tests.

I am in a country where most people try to get an official diagnosis as they get money from the government if diagnosed celiac. So the criteria are rigid, and therefore it is strict in teh rest of the world so that the criteriae all around teh world are uniform.....so Dr. Ford just calls early celiac for gluten intolerance.

Anyway, the tests are quite insensitive and early gluten intolerance and early celiac is very hard or impossible to diagnose, no matter the symptoms.....

nora

[tygwyn]

Thanks Nora... I'll have a look for Dr Ford... I definitely need all the help I can get with this because my first day of gluten-free today and I dont have a clue what I'm doing!! haha

Arent the tests I've had done, the ones you've mentioned then??

Gliadin IgA Abs: 6 U/mL (0-20)

Gliadin IgG Abs: 5 U/mL (0-20)

tTG IgA/IgG: 4 U/mL (0-20)

[nora-n]

Yes, you had the IgG versions done too.

This way they did not *have to* do the total IgA. (which was not done in your case)

Other labs routinely do the IgA version test and the total IgA, and only do the IgG version if the total IgA is low.

But your tests had some number, and were not 0, maybe that means something too.

Anyway, celiac tests are designed or calibrated to only be positive when gut damage is severe, and are quite likely to be negative in early celiac.