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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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HuberNS92    0

Hello everyone: This is my first post on this forum. I've been drawn to here by Doctor John Crisler's large following. I like his stance on Testosterone Replacement Therapy.
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Brief Bio/Description: I am a 20 year old college student whom plays tennis in the Spring. I am approximately 5'10" and 191 pounds. I have experienced a low quality of life though, since I was twelve years old.

Symptoms: depression, anxiety, constant fatigue, poor motivation, lesser erections, weight gains that are difficult to lose, and poor gains in muscle despite weight lifting 

Essentially, I feel like I am turning into a ghost of myself.

Additions (February): 

The fatigue is a major symptom lately. Also brain fog. 

Peculiarly, after I worked out recently I had two marks on both my shoulders, similar to scratches. Judging from eye, about 5 inches long. I assumed they were stretch marks. They disappeared the day after. I know that high cortisol can cause stretch marks. Obviously, I have low cortisol, but I understand there are cases in which the cortisol rises before it falls. These were not marks from lifting.

When I used the bathroom, I noticed blood on the toilet paper this morning.

When I cough, I feel a pain in the bottom left of my head. Close to my neck.

I don't know if the last two are relevant.
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Results:

Test One- Issued by my Family Doctor

Testosterone, Serum: 265 (348-1197)
"""""
Test Two


TSH: 2.360 (0.450-4.500) 
LH: 4.2 (1.7-8.6) 
FSH: 1.1 (1.5-12.4) 
Testosterone, Serum: 330 (348-1197) 
Prolactin: 8.5 (4.0-15.2) 
"""""
Test Three- Issued by an Endocrinologist

Free Testosterone(Direct): 9.4 (9.3-26.5) 
Testosterone, Total, Lc/Ms: 253.9 (348-1197) 
LH: 4.1 (1.7-8.6) 
FSH: 1.1 (1.5-12.4)
"""""
Test Four- Issued by an Endocrinologist-- I had been off Prozac for one week at this point. This is the only test I was off it.

Cortisol: 20.8 (2.3-19.4) 
TSH: 4.2: (0.450-4.500)

I had an MRI done, and the results came back clear.
"""""
Test Five- Test I requested-- Issued by Family Doctor-- This test was after taking Synthroid 50mcgs

Thyroid Panel With TSH
TSH: 1.930 (0.450-4.500)
Thyroxine (T4): 9.6 (4.5-12.0)
T3 Uptake: 34 (24-39)
Free Thyroxine Index: 3.3 (1.2-4.9)
Thyroid Antibodies
Thyroid Peroxidase (TPO) Ab: 8 (0-34)
Antithyroglobulin Ab: <20 (0-40)
Luteinizing Hormone (LH): 7.3 (1.7-8.6)
FSH, Serum: 1.3 (1.5-12.4)
Calcitonin, Serum: <2.0 (0.0-8.4)
Reverse T3, Serum: 21.5 (9.2-24.1)
Vitamin D, 25-Hydroxy: 32.6 (30.0-100.0)
Triiodothyronine (T3): 115 (71-180)
Estrogens, Total: 83 (40-115)
Ferritin, Serum: 70 (30-400)
Triiodothyronine, Free, Serum: 3.7 (2.0-4.4)

Additions (February): 

Obviously, my Adrenal Glands are struggling. I wonder how my anxiety and stress come into play.

Salivary Cortisol Test
Morning - 3.8 ng/mL (7.0-10)
Midday - 3.1 ng/mL (3.0-6.0)
Evening - 2.5 ng/mL (2.5-4.0)
Night - 2.2 ng/mL (<1.5)

Recently, it came to my attention that Gluten Intolerance can cause a wide array of hormonal imbalances. I didn't expect anything, however my T-Transglutaminase (Ttg) lgg is high. 

Celiac Disease Comprehensive:
T-Transglutaminase (Ttg) lgg: 8 U/mL (0-5 U/mL)
Immunoglobulin A, Qn, Serum: 102 mg/dL (91-414 mg/dL)
T-Transglutaminase (Ttg) Iga: <2 (0-3)
Deamidated Gliadin Abs, Iga: 3 (0-19)
Deamidated Gliadin Abs, Igg: 6 (0-19)
Endomysial Antibody Iga: Negative


I do not know if this is important, however, these tests were taken at 8 AM. This could cause for the imbalance in some tests, as I had not eaten. I wonder if these are impacted: Calcitonin, Serum; Ferritin, Serum; and/or Vitamin D, 25-Hydoxy.

It is also important to note, I am currently taking: 50mcgs of Synthroid in the morning, 20mgs of Adderall in the morning, and 10mgs of Prozac at night. I started taking Synthroid before the last blood work.

Revision (February): I have bumped my Synthroid to 75mcgs for no other reason that optimization. I have stopped taking Adderall and Prozac. I know that stimulants can hinder the Adrenal Glands. I felt like the Prozac wasn't worth the hassle at 10mgs. It hindered my sexual performance slightly, and if I wasn't getting much out of it I didn't want to continue. I am taking 3.75mgs of Androgel 1.62%. In addition to these prescription medications, I just began taking Licorice Root and Ashwagandha for stress and my Adrenal Glands, as well as a Rainbow Light's Multivitamin.
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Where I am at Now: My two endocrinologists have diagnosed me with unrelated Hypothyroidism and Hypogonadism caused by poor function of my Thyroid and Pituitary. Both my doctors were sure of their decision so I felt more comfortable, but I am skeptical because it seems unlikely for one my age to suffer from both without an underlying cause. 

One week ago I started Androgel 1.62%. I have a doctors appointment tomorrow and I will try to convince my doctor to prescribe HCG.

Revision (February): Now having adrenal fatigue, I am more believing that there is an underlying cause for my endocrine issues. I have an appointment at John Hopkins March 19. I hope that some headway into an accurate diagnosis will be made then.

Lately, I am feeling hopeless of the situation. Any advice is warmly welcomed.
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Questions:
 

Diagnoses: What are your thoughts on my diagnoses? Do you think they are legitimate? I have been told that it is indeed a function problem, but I have also been told that I need to see better doctors. 
Thank you for reading.


Nate

 

Now I am looking for to see if the T-Transglutiminase (Ttg) lgg levels are dangerous. It has came to my attention that gluten intolerance can cause a wide array of hormonal problems. Please let me know what you think.

Edited by HuberNS92

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shadowicewolf    166

hmmm... about the blood in stool thing, its highly likely you have some hemorrhoids and those decided to "act up". Not all that uncommon if "D" or "C" is present for long periods of time.

 

Sounds like you should look into having the endoscopy with biopsys done to rule out celiac (or even confirm). That would be the next step.

 

It is very possible for any one at any age to suffer from anything, its just statistically not likely. For example, when my galbladder was taken out it was dx'd with something that is normally seen in women in their 40s. I was 21 at the time.

 

Generally speaking about the food before blood tests, its better to do without than it is to do with. It should be fine, i've always fasted before any blood tests i've had just in case.

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HuberNS92    0

Thank you for the response, Shadowicewolf

hmmm... about the blood in stool thing, its highly likely you have some hemorrhoids and those decided to "act up". Not all that uncommon if "D" or "C" is present for long periods of time.

How do you diagnose a hemorrhoid? And "D" or "C"?

Sounds like you should look into having the endoscopy with biopsys done to rule out celiac (or even confirm). That would be the next step.

So I should be suspicious of Celiac's Disease with having the high T-Transglutiminase (Ttg) lgg?

It is very possible for any one at any age to suffer from anything, its just statistically not likely. For example, when my galbladder was taken out it was dx'd with something that is normally seen in women in their 40s. I was 21 at the time.

 

Generally speaking about the food before blood tests, its better to do without than it is to do with. It should be fine, i've always fasted before any blood tests i've had just in case.

I I will keep that in mind. When I did this Celiac's Comprehensive Panel I did eat gluten recently for the blood was drawn.

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shadowicewolf    166

D= Diarrhea C= constipation

 

From my understanding and experience, if you have bowl problems and it gets a little bloody and is bright red there is a very high chance that it is a hemorrhoid. You can be checked in the area by a doctor.

 

As for the high IGG, i'd think it would be enough to look into just in case.

 

Others on here would probably know more than me about the IGG number.

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HuberNS92    0

D= Diarrhea C= constipation

I have had some of each.

From my understanding and experience, if you have bowl problems and it gets a little bloody and is bright red there is a very high chance that it is a hemorrhoid. You can be checked in the area by a doctor.

 

As for the high IGG, i'd think it would be enough to look into just in case.

 

Others on here would probably know more than me about the IGG number.

What doctor would I get to check for a hemorrhoid and an intestinal biopsy for Celiac's?

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HuberNS92    0

Celiac Disease Comprehensive:
T-Transglutaminase (Ttg) lgg: 8 U/mL (0-5 U/mL)
Immunoglobulin A, Qn, Serum: 102 mg/dL (91-414 mg/dL)
T-Transglutaminase (Ttg) Iga: <2 (0-3)
Deamidated Gliadin Abs, Iga: 3 (0-19)
Deamidated Gliadin Abs, Igg: 6 (0-19)
Endomysial Antibody Iga: Negative

 

Hi everyone. Is this comprehensive anything to worry about? Looking at the high T-Transglutaminase (Ttg) lgg.

 

Thanks,

Nate

 

 

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guest134    6

False positives do happen on the TTG tests but we need to have some more info before we can think about that as a possibility. Your total IgA is in range which means that it should be the IgA based tests that take significance but it is also very low in the range. I am not sure how to interpret that. Can you provide us with some more info?

Age
Symptoms
Any recent infections/illnesses?
Any other autoimmune/non autoimmune diseases?
Do any diseases run in your family?

What made you pursue testing? 
 

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psawyer    687

I merged the topics. This is a busy board, and sometimes things get missed.

I am not an expert on the blood tests--they were not yet in common use here when I was diagnosed. You are positive on Ttg iGg, but not by a large margin. Taken as a set, I would not consider the results conclusive either way. I am not a doctor, so I can not give a diagnosis, just my own idea based on what I have seen here in the many years I have been a member.

Antibody tests (iGa and iGg) are based on long-term immune system activity. The time of day the blood was drawn will not matter, nor will what you did (or didn't) eat for breakfast.

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HuberNS92    0

I just found that along with the tests, I have severely low Estrogen: <3 on a range of 3-70!

 

Please, please weight in guys. I'm getting afraid of what this could be. Could all this be caused my Gluten? Or is it likely something else?

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nvsmom    332

TTG tests usually indicate celiac disease but they can indicate other problems too. I'm not sure if the ttg IgA tests are the same as the ttg IgG tests, but I do know that a positive ttg IgA can also indicate Hashimoto's thyroiditis, autoimmune liver disease, and I think Crohn's as well as some other problems like infections.  That being said though, when a positive TTG test appears, especially if it is quite elevated, it is usually celiac disease. Because yours is not that high, I would say that there is a small chance it is caused by something other than celiac disease... I'm not a medical professional though.

 

Because you have fairly low levels of serum IgA in your blood, that could explain why none of your tests including IgA were positive. There is the possibility that there would have been higher results if your serum IgA was not in the bottom 3% of the normal range... Low IgA levels are found more commonly in celiacs than in the regular population BTW.

 

A endoscopic biopsy (of the beginning of the small intestine) might give you more information. If damage is seen, then they know it is celiac disease. They go in through the top for this so they can't check for hemorrhoids with this test... for that you need to (ahem) check the other end.  ;)

 

Celiac disease can attack other body parts beyond the intestines. The skin is sometimes attacked, as is the liver or pancreas. Many organs and glands can be affected by the high levels of inflammation that can result from untreated celiac. There are cases of thyroiditis being induced by celiac disease, and as you know, adrenal fatigue can be caused by autoimmune stressors too.

 

In my opinion, all you can do to check for celiac disease at this point is request an endoscopic biopsy. Request a minimum of 6-8 samples to be taken so it is less likely that patchy villi damage is missed. After that, try the gluten-free diet for 3-6 months and look for improvements. Sometimes improvements are very slow to come on this diet (it took over 6 months for my joint pain to go) so you need to give it a loong time at 100% gluten-free to be really sure if there are benefits or not for you.

 

I hope you feel better soon.

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GFinDC    609

Hello Huber,

 

Another possibility with similar symptoms to celiac disease is non-celiac wheat sensitivity.  Some of us think of that as NCGI or non-celiac gluten intolerance.  It won't show up on the celiac disease antibody tests because it involves a different immune system response by the innate immune system vs the adaptive immune system.  Not much is known about it yet including what kind of affects it can have on the body besides GI symptoms, if any.

 

There are no tests for it yet.  To find out if you have  a problem with wheat or all gluten, you could try doing a strict gluten-free diet for 6 months to see if your symptoms improve.  I imagine you have had your vitamin and mineral levels checked?  If so you could take another test for them after 3 to 6 months and see if they have improved.

 

Non-celiac wheat sensitivity article
http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

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HuberNS92    0

Hello Huber,

 

Another possibility with similar symptoms to celiac disease is non-celiac wheat sensitivity.  Some of us think of that as NCGI or non-celiac gluten intolerance.  It won't show up on the celiac disease antibody tests because it involves a different immune system response by the innate immune system vs the adaptive immune system.  Not much is known about it yet including what kind of affects it can have on the body besides GI symptoms, if any.

 

There are no tests for it yet.  To find out if you have  a problem with wheat or all gluten, you could try doing a strict gluten-free diet for 6 months to see if your symptoms improve.  I imagine you have had your vitamin and mineral levels checked?  If so you could take another test for them after 3 to 6 months and see if they have improved.

 

Non-celiac wheat sensitivity article

http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

 

Thanks for the responses guys. I appreciate it. So you are basically saying that I could have some sort of gluten reaction, and that it could be causing major problems. 

 

The weird thing is that I don't have any digestive issues. No abdominal pain, stomachaches, constipation, etc. Is it still possible for me to have it?

 

Also, I don't have my vitamins and minerals checked. But I will no if this is working because my hormone levels!!!

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nvsmom    332

NCGI or celiac sometimes presents silently or neurologically. For instance, I was shocked that my migraines were largely caused by gluten... I'd had no idea!

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GFinDC    609

Hi Huber,

 

Yes, you can have gluten issues and no GI symptoms. Read up on silent celiac.  There may be more silent celiacs than regular GI symptom celiacs.   People walking around every day without GI symptoms but with other things happening in their bodies.  They estimate over 90% of people with celiac disease are undiagnosed.

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HuberNS92    0

Hi Huber,

 

Yes, you can have gluten issues and no GI symptoms. Read up on silent celiac.  There may be more silent celiacs than regular GI symptom celiacs.   People walking around every day without GI symptoms but with other things happening in their bodies.  They estimate over 90% of people with celiac disease are undiagnosed.

 

I understand that this is a really hard question, but just from what you guys know, do you think there is a possibility that all this could be caused by gluten??? It just seems crazy to think so! Fortunately if it is, I have a great way to test and check for improvement... my hormones!

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