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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Trying To Understand Blood Test Results
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15 posts in this topic

Hi everyone,

I started posting on here a couple of months ago. As far as I know I am not a celiac but I am intolerant to gluten. The way I discovered this was last October when I was going through extreme stress, I had a bout of what I thought was gastro (my daughter had, had a very bad bout) with terrible abdominal bowel pains, constipation and bloating. A friend suggested going gluten free so I tried it and it worked immediately to change my bowel symptoms.

Between then and now I've had so many symptoms and strange things happening to my body that I won't list them (I listed them in a previous thread). After getting no help from my Doctor, apart from her being willing to test for iron (and found it was low) I decided to find a better Doctor. This was at least 6 months after what I thought was being gluten free (the same Dr told me to continue to eat small amounts of gluten as I may be able to return to eating it one day, so I did, I had gravies or some stuffing and sauces without realising so I've only been truely gluten free for maybe 2-3 months).

My new Dr is a nutrition specialist, she thinks that I am not a celiac but am intolerant. Anyway, she did a lot of blood tests and I am now trying to work out what they mean. From the blood tests she told me that I:

Am low in Vit D

Am deficient in B12

May have hypothyroidism

Need to increase my insulin

My iron levels have increased to 94 in three months (after they were 26)

She will be getting further thyroid results, doing a urine test for something to do with either thyroid or insulin and doing a hair sample test. She has put me on a special magnesium compound and vit D compound.

Before I ask for specific understanding of some of the results I should say that my biggest worry is the symptom of a strange sensation I get mostly on my face and sometimes also on my left knee, elbow, shin and foot. Its sort of like when you are almost over the anesthetic from the dentist and sometimes like a menthol hot/cold sensation. Not so much tingling or numbness although I have also had those.

So, these are the main results I need help understanding:

Thyroid Function - TSH is 3.10

Vitamin D - Hydroxycalciferol - 81 nmol/L (50-150)

Insulin resistance - Glucose/Insulin Ratio - 10.6

Vitamin B12 - 284

I have read a lot about the connection between gluten intolerance, low vit D, B12, iron and even the connection with Hypothyroidism. Can anyone shed any light or tell me whether they think these results would explain the sensations in my face etc... My Dr said to me that she is fairly sure that all my symptoms can be explained through deficiencies and nothing is causing a red flag for her. I have to admit, I am still slightly convinced that I have MS but on the other hand, its probably not. No Dr has suggested this, only my silly brain.

Reassurance is needed.

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Having multiple vitamin deficiencies (unless you eat nothing but fast food) tends to point towards celiac disease, so it's good that you're already on the diet!

B12 deficiencies can give you all sorts of uncomfortable tingling and sensation problems, so that's probably what your doctor has in mind. I had problems with an uncontrollable burning sensation for awhile. Have you started to get the B12 shots? If it's a b12 issue, you'll feel better within a couple of months.

Do the sites with the strange sensations ever change color?

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Am low in Vit D

Am deficient in B12

May have hypothyroidism

Need to increase my insulin

My iron levels have increased to 94 in three months (after they were 26)

My, those symptoms sound familiar! You have just described much of the board (me included), except for the insulin as most of us are lucky enough to not be diabetic. Low iron, D, B12, and you're probably not getting enough calcium either. These are totally normal for folks with gluten intolerance and your nutritional status will improve gluten-free. Also if you're Type 1, there is a connection between Type 1 and celiac so it's not terribly surprising if you developed celiac or gluten intolerance.

Neurological problems are not uncommon either. As Chiana says, the low B12 can to it. Also gluten can cause neurological autoimmunity that can do weird things. Going off gluten will help if that's the case. Also, has your doctor ruled out diabetic neuropathy?

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Do the sites with the strange sensations ever change color?

No they don't change colour.

My, those symptoms sound familiar! You have just described much of the board (me included), except for the insulin as most of us are lucky enough to not be diabetic. Low iron, D, B12, and you're probably not getting enough calcium either. These are totally normal for folks with gluten intolerance and your nutritional status will improve gluten-free. Also if you're Type 1, there is a connection between Type 1 and celiac so it's not terribly surprising if you developed celiac or gluten intolerance.

Neurological problems are not uncommon either. As Chiana says, the low B12 can to it. Also gluten can cause neurological autoimmunity that can do weird things. Going off gluten will help if that's the case. Also, has your doctor ruled out diabetic neuropathy?

My Dr said that I'm not a diabetic yet but that I'm at risk for it later in life. She told me I should be doing weight resistance exercise to increase the insulin levels. On the test results it also says:

Glucose fasting - 4.1 and then 'diabetes unlikely'

I think all this means that I don't have diabetes yet but that I could develop if I don't get on top of things. I should say, I'm not at all obese, I weigh somewhere around 63kg.

I have been eating gluten free for the last 6-8 months so not sure why I still have these deficiencies. The thing I thought of was that when I went gluten free I stopped eating properly, mainly due to not knowing what to actually eat. The fact that my iron went up once I started to take a low dose supplement and increase iron rich food intake indicates to me that my digestive system is now absorbing nutrients again. I have not been working on increasing anything but the iron though as I wasn't aware of the other deficiencies.

The thing I don't understand is the TSH levels.

Also, do you all agree that thats a low B12 level? On the test results it says 'within normal range' however my Dr pointed out that she thinks its low for me and that other Drs may say its fine but she doesn't agree. I also heard that in places like Japan, if your B12 is below 500 they treat you!! How can Australia have such a different reading? She has not given me shots yet as she wants to wait until all the testing is complete and then work out a proper course of correcting it all.

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I will also say that many times people with Celiac also become diabetic or pre diabetic. Again it is because your body isn't getting the nutrients it needs (one of those being sugar).

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Do you know if it can be prevented or reversed?

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I got some further Thyroid function results that I don't understand so if anyone can shed some light I'd appreciate it:

TSH - 3.10 (0.5 - 5.0)

Free T4 - 17 (11.0 - 21.0)

Free T3 - 5.5 (3.1 - 6.0)

TPO ab - 152.0 (<34)

TG ab - 609.8 (<115)

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I got some further Thyroid function results that I don't understand so if anyone can shed some light I'd appreciate it:

TSH - 3.10 (0.5 - 5.0)

Free T4 - 17 (11.0 - 21.0)

Free T3 - 5.5 (3.1 - 6.0)

TPO ab - 152.0 (<34)

TG ab - 609.8 (<115)

You seem to have Hashimoto's thyroiditis. Didn't your doctor tell you this??? It's an autoimmune disease that causes hypothyroidism. I have it too. The TPO (thyroid peroxidase) and TG (thyroglobulin) are the autoimmune antibodies and you have both kinds. Do you have access to a good endocrinologist?

Hashimoto's isn't a huge deal, but it can cause you to go back and forth between hypo- and hyperthyroid until there is enough damage that you're permanently hypothyroid. Usually Hashimoto's is treated by giving thyroid hormone so the thyroid gland is less active. It tends to lessen the autoimmunity and treats the hypothyroidism. There is no cure, but you can live a totally normal life on thyroid hormone replacement.

Your TSH and the rest of the levels look pretty good, though some people are saying TSH above 2.5 is a bit high. You really need to get an endocrinologist looking at the whole picture.

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The Dr didn't have these results when I saw her so she phoned for them to be sent. I think she would have received them today too. My Mum has Hashimotos apparently too althought she said something about the last Dr she saw wasn't sure. I've phoned the Dr to see if I need to come in before my next visit. Next visit will be end of July after I've done the other tests. Do you know if this is at all related to gluten intolerance?

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Autoimmune diseases cluster, and there is an association between Hashimoto's and celiac. Going gluten-free sometimes helps people with Hashimoto's. There is one autoimmune disease expert who says all people with Hashimoto's should go gluten-free because it helps so consistently.

http://drknews.com/changing-your-diet-is-the-first-step-in-addressing-hashimotos/

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Only according to my Dr I'm not celiac, just intolerant. My Mum tells me that she is not yet on pills for her Hashimotos after 6 years so maybe I won't have them right away. Its very interesting that there is a connection. Thanks so much.

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Only according to my Dr I'm not celiac, just intolerant. My Mum tells me that she is not yet on pills for her Hashimotos after 6 years so maybe I won't have them right away. Its very interesting that there is a connection. Thanks so much.

Blood tests are negative in up to 30% of celiacs. Don't be so sure you're not celiac if a gluten-free diet makes a huge difference. ;)

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Blood tests are negative in up to 30% of celiacs. Don't be so sure you're not celiac if a gluten-free diet makes a huge difference. ;)

When my original Doctor did the test she did it when I'd been gluten free for three weeks. I told her this and she still did it. I don't count that test at all because of course it was going to be negative. I don't think this Dr is planning on testing me again as yet.

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There are some doctors who believe that once a person has been diagnosed with Hashimoto's, they should start treatment. I'm not a medical professional, so I can't opine in one way or another, just saying that's some of the wisdom that's out there. Are you having anything you might think is thyroid related?

I have Hashimoto's and had hypothyroid symptoms long before my labs ever showed my thyroid hormone levels to be low. I am now treated to keep my TSH suppressed and I've felt much better since doing that.

Your thyroid hormone levels are not too low, your TSH not terribly high, but the number of antibodies makes it certain that your thyroid is under attack.

I am just learning about the autoimmune thyroid/gluten connection, and am starting to take it seriously. I found some research out there, though I haven't had time to dig deeply enough to assemble plenty of credible information, that the DQ2.2 gene that I have (suppsedly very low celiac risk) is also connected with autoimmune thyroid.

A good source of information on Hashimoto's is Chapter 8 of Thyroidmanager.org, an online textbook by endocrinologists for endocrinologists. It is a challenge to slog through some of it, but it's very informative. According to thyroidmanager, there is a small percentage of Hashimoto's that goes into remission.

I wish I'd known about the gluten connection when I first was diagnosed, I'd have tried to beat back the thyroid disease by going gluten free. Oh well.

good luck to you.

beachbirdie

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Thanks for that info. I got my test results for the urine analysis yesterday and my iodine level is 79. It says that its only mildly low so not sure what that means. I've been eating a lot more fish and finding my face is actually stopping the strange sensations, well they are reduced anyway.

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