How to Prove I have Celiac Disease? My Symptoms Match, But the Test Have Yet to Confirm It

[Noitartst]

I have the symptoms, but no proof.  I need to go to a gastroenterologist for further checks, but if I don't have Celiac, what do I have?  I thought I had thyroid issues because I had symptoms of that, but couldn't test for it; in any case, Celiac is still a beter symptom fit, but in any case, I have smoke, but just can't find the fire.

[trents]

What's keeping you from getting tested for celiac disease, or thyroid disease for that matter? Is this an economic or insurance issue? There is no way to confirm you have either one unless you get tested. The first stage of testing for celiac disease is a simple blood draw which is sent off to a lab to be checked for antibodies characteristic of celiac disease. Thyroid testing also involves a simple blood draw. What's keeping you from getting tested? Can you give us more information please?

[Noitartst]

2 hours ago, trents said:

What's keeping you from getting tested for celiac disease, or thyroid disease for that matter? Is this an economic or insurance issue? There is no way to confirm you have either one unless you get tested. The first stage of testing for celiac disease is a simple blood draw which is sent off to a lab to be checked for antibodies characteristic of celiac disease. Thyroid testing also involves a simple blood draw. What's keeping you from getting tested? Can you give us more information please?

I already took the antigen (anti-gluten antibodies) test in the bloodstream, and it came out negative, though maybe I shoulda eaten more gluten, beforehand.  As for the thyroid test, I took that test years ago, and the results there also came back negative.  I still have symptoms related to those issues, though, and as a result, I'm wondering what more I ought to try.  As of now, I'm planning to see a gastroenterologist.

[trents]

When you had the antibody blood test performed, had you already started on a gluten free diet? The Mayo Clinic guidelines are the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the blood draw. If you were not approximating that you should consider getting retested using those guidelines. Or you can start the gluten free diet in earnest and see if your symptoms improve.

It is also possible you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there are no tests. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease.

Edited April 2, 2023 by trents

[Wheatwacked]

Hi Noitartst, you've got good questions.

Firstly, and in my opinion a key question, who do you need to prove it to and why do you need to prove it?  If you eat wheat, rye or barley and you get symptoms that interfere with your life, and when you don't eat gluten your symptoms improve, you have gluten sensitivity (GS) or Non-Celiac Gluten Sensitivity (NCGS) or Celiac Disease.  Some researchers think they are a spectrum of symptoms; others that each is a separate disease. In the end they have one thing in common: Gluten.  There is only one remedy. Don't eat it.

Other than cheap carbohydrates there is no nutrition in wheat, barley and rye than cannot be gotten from other foods.  In fact in many countries milled grains are fortified with synthetic nutrients.  Some of those fortification nutrients, Folic Acid, betacarotene, vitamin A, vitamin E have significant negative effects on some people. Example: "A meta-analysis of 6 clinical trials reporting prostate cancer incidence showed a 24% increase in prostate cancer incidence associated with folic acid supplementation" Folate and cancer: a tale of Dr. Jekyll and Mr. Hyde?.

In US nutrition labelling folic acid and folate are used interchangebly.  Federal Nutrition Board (FNB) has placed a "Tolerable Upper Intake Levels (ULs) for Folate [ie. Folic Acid] from Supplements or Fortified Foods" at 1000 mcg while there is no upper intake limit from food sourced folate. Why is that?

11 hours ago, Noitartst said:

I thought I had thyroid issues because I had symptoms of that

You want to raise your vitamin D level to 80 ng/ml.  Daily intake of vitamin D is not so much the issue as blood plasma level. We have as a species evolved to live across the globe. The farther from the equator, we have periods of no vitamin D from sunshine so our body is adapted to store it for use during the winter. think midwinter blues. As our industrial society has developed we get less sunshine and the healthcare industry actively recommends avoidance through sunscreen and clothing. Vitamin D deficiency is already extremely common, affecting approximately 42% of the U.S. population. Liver is a great food source but since the 60's we are advised to avoid it, yet we get fatter and sicker as a population.

Low vitamin D is found in every autoimmune disease, bone health issue, and metabolic disease. Try to find anyone that has a 25-hydroxy vitamin D plasma level around 80 ng/ml when diagnosed with anything. Yes we can survive low D levels seasonally, we evolved that way, but constant low D is a big part of the recipe for ill health. By the way lifeguards in summer when tested for D are around 80. Except my son a lifeguard who was so efficient protecting himself from skin cancer from the Forida sun that he was told by his doctor to start taking vitamin D. And even then he still has "precancerous spots" removed biannually. Perhaps overprotection is counterproductive.

• "In this case-control study, at diagnosis, children with celiac disease showed lower levels of plasma 25-OHD compared with healthy subjects. Lower Level of Plasma 25-Hydroxyvitamin D in Children at Diagnosis of Celiac Disease Compared with Healthy Subjects
• "Many studies have looked at the role of vitamin D in diabetes and have shown an association between low levels of vitamin D and increased risk for type 2 diabetes and its complications. Low Vitamin D May Contribute to Insulin Resistance.

 

For your thyroid issues look at vitamin D and Iodine intake. In the U.S., studies have shown that median urinary iodine levels have decreased by approximately 50% between the early 1970s and the early 1990s. The common treatment is thyroxine, but thyroxine is simply a synthetic ( and profitable) source of iodine. 

"During 2017 and 2018 LT4 was the third most prescribed medication, with 98 million prescriptions in 2017 and 96 million prescriptions in 2018"   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7238309/.

Cheaper and healthier to chomp on some Nori.

Depending on your symptoms you may be also deficient in some 20 other vitamins. Celiac Disease caused malnutrition through malabsorption while NCGS causes food avoidance and there are just some, like Choline, D, Potassium that our western diet is simply just deficient.

Edited April 2, 2023 by Wheatwacked

[Noitartst]

6 hours ago, trents said:

When you had the antibody blood test performed, had you already started on a gluten free diet? The Mayo Clinic guidelines are the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the blood draw. If you were not approximating that you should consider getting retested using those guidelines. Or you can start the gluten free diet in earnest and see if your symptoms improve.

It is also possible you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there are no tests. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease.

Well, I guess I should be eating gluten for the next six weeks, then;  I want to know for sure if I have Celiac Disease, and I need to rule it out, if only for my own curiosity, and also because I seek to know if Celiac Disease runs in the family.  The uncertainty is what bothers me the most.

[trents]

Studies vary widely in the familial connection rate of celiac disease. For a long time, researchers believed that there is a 10% chance for first degree relatives to have celiac disease if one family member was diagnosed with it. Two more recent and large studies pegged it at almost 50%. First degree relatives refer to those who gave birth to you or those to whom you gave birth.

[Noitartst]

6 hours ago, Wheatwacked said:

Hi Noitartst, you've got good questions.

Firstly, and in my opinion a key question, who do you need to prove it to and why do you need to prove it? 

You want to raise your vitamin D level to 80 ng/ml. 

First, I want to prove I had an issue, to professionals, family members, and, not the least, myself; it proves the mental health issues I had a specific cause, after years of doubt, misery, and self-torture.  

Second, should I test my vitamin D levels?  As is, I eat a lot of magnesium through dark chocolate, which I love; milk chocolate I avoid.  But the fact is, if I indeed have Celiac Disease, what exactly does my body have trouble absorbing, and how to compensate thereto?  As for Iodine, I do go out of my way to eat supermarket seaweed in the Asian section; I don't eat it every day, but I do binge the stuff, just a our ancestors intermittently gorged from time to time, and given I don't eat much wheat flour, bromine doesn't much push out the incoming iodine

[trents]

16 minutes ago, Noitartst said:

  But the fact is, if I indeed have Celiac Disease, what exactly does my body have trouble absorbing, and how to compensate thereto? 

Typically, B vitamins and D3. We commonly recommend celiacs just starting to eat gluten free to supplement with B12, B complex, D3 and magnesium in order to jump start healing and to continue at least until the villi are restored which can take 2 years or more.

[Wheatwacked]

Yes to the 25-hydroxy vitamin D plasma test. Low vitamin D would help explain your mental health issues. Taking 250 mcg a day (10,000 IU) solved mine after 30 years. And low D puts you at risk for other autoimmune diseases. It is not a cure, but a preventive measure.

• Vitamin D and Depression: Where is all the Sunshine?
•  Vitamin D and infectious diseases it has been recognized that vitamin D is able to modulate a variety of processes and regulatory systems such as host defense, inflammation, immunity, and repair. According to recent studies, vitamin D deficiency is likely to be an important etiological factor in the pathogenesis of many chronic diseases, as well as it has been associated with higher mortality rate for respiratory disease.

Quote

• Surge of information on benefits of vitamin D
• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
• More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;
• When a patient misses dosing, an attained level of 80 ng/mL gives the patient an additional month of good levels off of vitamin D.
• McCarthy said the optimal level of 25(OH)D still remains to be determined with precision, as the peak effects have yet to be found.

Here is a chart of the vitamins and minerals likely to be affected.

[Noitartst]

8 hours ago, trents said:

Studies vary widely in the familial connection rate of celiac disease. For a long time, researchers believed that there is a 10% chance for first degree relatives to have celiac disease if one family member was diagnosed with it. Two more recent and large studies pegged it at almost 50%. First degree relatives refer to those who gave birth to you or those to whom you gave birth.

Ouch; makes me wanna re-test more.

[Noitartst]

Ouch.  So do you think my getting retested worth it, given what I've stated?

[trents]

5 minutes ago, Noitartst said:

Ouch.  So do you think my getting retested worth it, given what I've stated?

You state that you really feel a strong need to know for sure if you have celiac disease. So, yes. Go back to eating regular amounts of gluten for 2 months and get retested. If you can handle the gluten that is. If you have already begun a gluten-free diet and been on it for a significant period of time, you may find you react more violently to gluten if you have celiac disease.

[Noitartst]

I see; thank you for that info.