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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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lisa_herring

Anyone had anything like this?

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To preface, I'm 32/F. I was diagnosed with celiac in 2002, Hashimotos in 2007, hypothyroidism in 2009. I also had my gallbladder removed in 2007. Everything's pretty maintained in that my blood work is normal, though my antibodies are high.

In the last few years I've had some crazy problems with fatigue and cognitive issues—difficulty articulating myself, difficulty understanding instructions and learning new things, confusion, short term memory issues. I've also lost a ton of hair and have chronic dry skin and chapped lips, though excessively oily skin on my face. Less significant symptoms have been headaches, eye strain, irritability, a

I've seen several doctors since this began and the general answer I get is that this is related to Hashimoto's but since my thyroid labs are normal there's really nothing they or I can do. Sometimes I'll get referred to other specialists but the consensus is almost always that the lab work is normal and that on paper, I'm fine. Even though I'm clearly not.

I'm concerned now that maybe it's a vitamin/nutrient deficiency, but I don't really know where to begin and my doctors aren't much help (I have a not great HMO). I had some blood work done in May and my B12 was low normal at 350 so I had 3 B12 shots in June. I got more tests done in October and it was <2000 which seems like an insane increase. I asked my doctor if it's possible my body wasn't using it and she dismissed it.

Has anyone gone through something similar? I'm reaching the point where I'm grasping at straws.

 

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Sure sounds like low thyroid symptoms to me. I understand thyroid level assessment can be tricky and the tests ordered by most doctors often aren't much help. Do you have access to an endocrinologist? And concerning B12, are you taking folate? Folate supplementation can render B12 level testing invalid.

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8 hours ago, lisa_herring said:

To preface, I'm 32/F. I was diagnosed with celiac in 2002, Hashimotos in 2007, hypothyroidism in 2009. I also had my gallbladder removed in 2007. Everything's pretty maintained in that my blood work is normal, though my antibodies are high.

In the last few years I've had some crazy problems with fatigue and cognitive issues—difficulty articulating myself, difficulty understanding instructions and learning new things, confusion, short term memory issues. I've also lost a ton of hair and have chronic dry skin and chapped lips, though excessively oily skin on my face. Less significant symptoms have been headaches, eye strain, irritability, a

I've seen several doctors since this began and the general answer I get is that this is related to Hashimoto's but since my thyroid labs are normal there's really nothing they or I can do. Sometimes I'll get referred to other specialists but the consensus is almost always that the lab work is normal and that on paper, I'm fine. Even though I'm clearly not.

I'm concerned now that maybe it's a vitamin/nutrient deficiency, but I don't really know where to begin and my doctors aren't much help (I have a not great HMO). I had some blood work done in May and my B12 was low normal at 350 so I had 3 B12 shots in June. I got more tests done in October and it was <2000 which seems like an insane increase. I asked my doctor if it's possible my body wasn't using it and she dismissed it.

Has anyone gone through something similar? I'm reaching the point where I'm grasping at straws.

 

Which antibodies are still high?  Thyroid or celiac?  

I think your doctor may be wrong about the B-12.  My levels were extremely elevated and I was not taking supplements.  Turns out I was getting B-12 in soy milk.  After a year of eliminating the fortified soy milk (which uses the cheapest form of B-12), my level went into the normal range.  So, those shots may not have helped you at all if you body is not processing it.  

I get my vitamins from a balanced diet.  If you need or want to try supplementation, consider a sublingual Methylcobalamin gluten-free version that your might better absorb.  

Edited by cyclinglady

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Hi Lisa,

I'm sorry that you are having these issues!

Are your celiac antibodies normal?  If they are, then this sounds very much like thyroid issues.  When you say your labs are normal, can you be more specific?  Get a copy of your results if you don't have them.  Thyroid ranges can vary.  Some doctors are still using an outdated range of .45 to 4.5 even though most people feel at their best with a TSH close to 1.  The Free T3 and Free T4 numbers are really important and should be in 50-75% of the range.  

If your numbers aren't in this area, but are in the "normal" range, you could most likely benefit from some thyroid medication.

Hope this helps!

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21 hours ago, trents said:

Sure sounds like low thyroid symptoms to me. I understand thyroid level assessment can be tricky and the tests ordered by most doctors often aren't much help. Do you have access to an endocrinologist? And concerning B12, are you taking folate? Folate supplementation can render B12 level testing invalid.

I've been seeing an endocrinologist every few months, my tests are pretty much always consistent. Sometimes I have high thyroid antibodies, everything else is always in the normal range.

It's funny that you mentioned folate though. I'm not taking a supplement, but when I first tested in May, my folate was pretty high and my B12 was 350. I thought that was kind of strange.

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13 hours ago, cyclinglady said:

Which antibodies are still high?  Thyroid or celiac?  

I think your doctor may be wrong about the B-12.  My levels were extremely elevated and I was not taking supplements.  Turns out I was getting B-12 in soy milk.  After a year of eliminating the fortified soy milk (which uses the cheapest form of B-12), my level went into the normal range.  So, those shots may not have helped you at all if you body is not processing it.  

Sorry, my thyroid antibodies are high, not celiac. 

That's very interesting about the soy milk! I don't do soy, but I'll have to see if there's anything else in my fridge!

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13 hours ago, icelandgirl said:

I'm sorry that you are having these issues!

Are your celiac antibodies normal?  If they are, then this sounds very much like thyroid issues.  When you say your labs are normal, can you be more specific?  Get a copy of your results if you don't have them.  Thyroid ranges can vary.  Some doctors are still using an outdated range of .45 to 4.5 even though most people feel at their best with a TSH close to 1.  The Free T3 and Free T4 numbers are really important and should be in 50-75% of the range.  

If your numbers aren't in this area, but are in the "normal" range, you could most likely benefit from some thyroid medication.

Hope this helps!

Thanks!

I'm not totally sure what the ratios are (not so great math) but here are all the results from May:

TSH - 1.83 (0.40-4.50 (mIU/L)
Free T4 - 1.0 (0.8-1.8 ng/dL)
Free T3 - 3.6 (2.3-4.2 pg/mL)
Reverse T3 - 15 (8-25 ng/dL)
Thyroid Peroxidase Antibodies - 38 (<9 IU/mL)
Thyroglobulin Antibodies - 32 (<or= 1 IU/mL)

I should have also mentioned that I'm on Nature Throid (32.5 mg).

I also meant to include this before but it looks like it was cut off in my original post, but one of the biggest reasons I'm inclined to think it's not my thyroid is because I lost about 15 lbs without even trying in the past few months. And that's after struggling to keep it below 130 for my entire 20s (I'm very short so for me 130's quite a bit). 

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You need to go back and have your thyroid panel redone.  Looking at old data from May is not useful.  You could be running hyper.  Yes, with Hashi’s you can swing back and forth from hypo to hyper.  

I had some pretty bad swings (pretty dramatic and quick) ) just before I was diagnosed with celiac disease.  It drove my doctor crazy.  I would be hyper one week (muscle eye pain, hot all the time (not flashes), lost weight, jittery and could not sleep causing fatigue and weakness).  Then the next week, I would be cold, have the urge to take naps, etc.  My lab results were all over the place.  It made it hard to get my thyroid medication right.  

After going gluten free my thyroid seem to stabilize.  It whacked out this past Winter.  I developed daily hives .  My thyroid antibodies were elevated (over 300) but well below previous measurements (over 2,000).  My research seems to suggest that it is how you feel and not how high your antibodies are in regards to Hashimoto’s.  

Any fortified food (like that soy milk) or supplements may not be processed by your body.  We are all different.  Look to natural food sources.  I avoid even multiple vitamins for this reason.    I bet those B-12 shots were just the cheap synthetic version.  Fine for most, but not all people.  So the theory is that it builds up into your blood, but is not really used.  So, you could be deficient despite having elevated blood levels.  Google it.  Same goes for folate.  Mine is super high....still.  

When was the last time you had your celiac antibodies done?  You might have had a gluten exposure.  That would explain the weight loss.  For me, celiac disease causes a much faster weight loss than running hyperthyroid.  

Email your doctors.  Explain your symptoms and ask for testing again.  I do this prior to netting face-to-face.    You should be working with a celiac-savvy GI (you can find one even in an HMO).  

You can do something about celiac disease by avoiding gluten and insuring you do not get any exposures.  Nothing really for the Hashimoto’s except to decrease stress, exercise and eat healthy, gluten free of course!  

I think we are related.  I had my gallbladder out in 2005.  Non-functioning.  0% refraction rate on my HIDA scan.  Infected.  In the old days, I would have died.  

 

Edited by cyclinglady
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Just wanted to leave a link to an article about nutritional deficiencies that may play a part in thyroid problems.  

http://hypothyroidmom.com/10-nutrient-deficiencies-every-thyroid-patient-should-have-checked/

And  a research article that links Mthfr gene mutations to thyroid problems.

https://www.ncbi.nlm.nih.gov/pubmed/23039890

Mthfr genes are often found in people with Celiac Disease.  

https://www.ncbi.nlm.nih.gov/pubmed/16917400

People with the Mthfr genes need to take the methylated forms of vitamins B 12, B6,  and folate, methylcobalamin, P5P, and methylfolate.  Other forms are not able to be processed by the body.  

Cycling Lady had rightly suggested a methylcobalamin supplement earlier.

The eight B vitamins all work together.  B 12 and folate work together especially well.  If a person has a B 12 deficiency, it could be caused by an underlying Folate deficiency.  Without enough folate to work with the B 12, the B 12 shots would not be usable.   And then the aforementioned Mthfr gene and the need for the methylated forms of folate and B 12 comes into play.

 https://www.ncbi.nlm.nih.gov/pubmed/19248194

Supplementing all the B vitamins help because they all work together.  Vitamins A and D are often low in Celiacs.  And don't forget about minerals, too. 

https://www.ncbi.nlm.nih.gov/pubmed/24195595

Hope this helps.  

 

  

 

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I just wanted to check back in, in case anyone happens upon this with similar symptoms.

I didn't mention this in the original post, but I've been taking 5000 mcg of Methyl B12 sublingually daily for at least a year. I had my doctor test my HoloTC and it turns out that even though I was taking quite a bit of B12 and my serum levels were, my body wasn't using it. Back to B12 shots!

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43 minutes ago, lisa_herring said:

I just wanted to check back in, in case anyone happens upon this with similar symptoms.

I didn't mention this in the original post, but I've been taking 5000 mcg of Methyl B12 sublingually daily for at least a year. I had my doctor test my HoloTC and it turns out that even though I was taking quite a bit of B12 and my serum levels were, my body wasn't using it. Back to B12 shots!

Fine to get the shots, but why are you not absorbing the B-12?  What is the root cause?  Are you Vegan, take antacids, had weight loss surgery, or is your celiac disease active?  

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