Question about celiac testing

[mspat3]

I stopped eating gluten 2 months ago in an attempt to solve a 20-year battle with diarrhea.   I had been given a diagnosis two decades ago of irritable bowel syndrome, but in recent years, the diarrhea had gotten worse, up to 10x a day in the bathroom, and I couldn't nail down a trigger for it to consistently be getting worse and worse.  Various doctors over the years just told me to try and reduce stress, try meditation or yoga, etc, but none of those things worked.  This year, I noticed my stools turning pale and yellowish, but my routine blood work didn't show that I had liver troubles.  About two months ago, while doing an internet search on yellow or pale diarrhea, I saw the mention of celiac disease, and since I had nearly all the symptoms listed online, and I felt like I'd tried everything else, I decided to try a gluten-free diet.  That day, I only went to the bathroom twice.  A huge change.  The next day, I didn't go at all.  Then from that point on, I had what I consider to be normal bathroom habits--one trip a day, normal color and consistency, unless I accidentally ate something containing gluten. 

Last week, I went to see an allergist for some hives I was having after working in the yard.  She tested me for environmental allergies, but after hearing about my digestion, she added in a few food-related skin tests.  I tested positive for peanut, wheat, and sesame seeds.  She said she wanted to order blood work to get more information on the peanut allergy, as well as testing me for other types of nuts, IgE, and Tryptase.   I scheduled the blood test for May 18.   

This morning, my allergist e-mailed me to say that she is adding a celiac panel to the laboratory order.  The test is called "Celiac Disease Comprehensive Panel with Gliadin Antibody (IgG)".  

My question is whether I should delay my trip to the lab and resume gluten-containing foods for a period of time so that the test will detect any problems?   I'm thinking that going into the test eating gluten-free will not give accurate results?  Or would resuming gluten between now and the 18th be long enough for a blood test to offer an accurate result?   

I will be contacting my doctor later today once their office opens, but I wanted to ask here also.  

Thank you! 

[trents]

Yes, you would need to resume eating gluten for 6-8 weeks before the test. The equivalent of two slices of wheat bread daily. Those are the Mayo Clinic guidelines. The serum antibody testing is designed to detect inflammation markers produced by the ingestion of gluten. If you haven't been ingesting gluten for a long period of time the inflammation will have subsided.

The other possibility is getting an endoscopy with biopsies of the duodenum lining. You would only need to be eating said amount of gluten for two weeks for the biopsy to reveal damage to the villi.

Edited May 9, 2022 by trents

[mspat3]

5 hours ago, trents said:

Yes, you would need to resume eating gluten for 6-8 weeks before the test. The equivalent of two slices of wheat bread daily. Those are the Mayo Clinic guidelines. The serum antibody testing is designed to detect inflammation markers produced by the ingestion of gluten. If you haven't been ingesting gluten for a long period of time the inflammation will have subsided.

The other possibility is getting an endoscopy with biopsies of the duodenum lining. You would only need to be eating said amount of gluten for two weeks for the biopsy to reveal damage to the villi.

I sent my allergist a message through their telemedicine application this morning, asking if I should return to consuming gluten again for a period of time before the test, and she responded back just now to say, "No, not at all. Consuming gluten won't affect the results."    However, every site I have looked at today while waiting for her response has said exactly what you did--that 6-8 weeks of eating gluten offers best results.  She wants me to keep the test appointment on the 18th of this month so we can discuss the results at the end of the month.   Now, I'm so confused.  Part of me wants to go back to eating gluten again, even for the next 9 days, just so I can at least hope to get an accurate result.  

Thank you so much for responding to my question. 

[trents]

Hmm. Neither celiac disease or NCGS (Non Celiac Gluten Sensiitvity) are allergic reactions. We don't know what is the immune system pathway engaged by NCGS but we do know that celiac disease is an autoimmune disorder and not an allergy. So, not sure that your allergist was qualified to answer your question. NCGS has many of the same symptoms as celiac disease and is 10-12x more common. There is no test fro NCGS at this point in time. Celiac disease must first be ruled out. The antidote is the same, abstaining entirely from gluten.

Edited May 9, 2022 by trents

[mspat3]

10 minutes ago, trents said:

Hmm. Neither celiac disease or NCGS (Non Celiac Gluten Sensiitvity) are allergic reactions. We don't know what is the immune system pathway engaged by NCGS but we do know that celiac disease is an autoimmune disorder and not an allergy. So, not sure that your allergist was qualified to answer your question. NCGS has many of the same symptoms as celiac disease and is 10-12x more common. There is no test fro NCGS at this point in time. Celiac disease must first be ruled out. The antidote is the same, abstaining entirely from gluten.

I went to the lab website and looked up the celiac panel she requested, and it does say that a false negative could be received if a gluten-free diet is initiated before the test.  Now I am sending her that link and again inquiring if, perhaps, we should do the other tests she requested (nut allergy panel, IgE, and Tryptase), and wait on the Celiac Comprehensive Panel for 6-8 weeks.  It feels silly to get a test for something if I know the results could be a false positive.  

I know that I am allergic to wheat as of last week's skin prick test.  In requesting the Celiac Panel, she said she was hoping "to get a better idea regarding your reaction to wheat."   I would just like to get the most accurate I can if we're going to go through with the test.  I will see what she says.   Thank you again. 

[trents]

It is certainly possible for someone to both have celiac disease and also be allergic to wheat.

I think your idea to postpone the comprehensive celiac panel is a wise one.

Those of us who have been coping with gluten-related medical conditions for years can attest to the fact that the medical community at large is pretty ignorant about this particular slice of pathology. So, you get a lot of bum steers from doctors. We have discovered you can't trust them to be up on gluten-related disorders so you have to go to appointments armed with information and prepared to be appropriately assertive in order to get the tests done that you need.

The other thing to know is that it is common for people with gluten disorders to develop other non-gluten food sensitivities/intolerances. Common among them are dairy, corn, nuts and eggs. All this represents an immune system that has become hyper vigilant and has started to identify miscellaneous normal food things as invader threats.

[mspat3]

58 minutes ago, trents said:

It is certainly possible for someone to both have celiac disease and also be allergic to wheat.

I think your idea to postpone the comprehensive celiac panel is a wise one.

Those of us who have been coping with gluten-related medical conditions for years can attest to the fact that the medical community at large is pretty ignorant about this particular slice of pathology. So, you get a lot of bum steers from doctors. We have discovered you can't trust them to be up on gluten-related disorders so you have to go to appointments armed with information and prepared to be appropriately assertive in order to get the tests done that you need.

The other thing to know is that it is common for people with gluten disorders to develop other non-gluten food sensitivities/intolerances. Common among them are dairy, corn, nuts and eggs. All this represents an immune system that has become hyper vigilant and has started to identify miscellaneous normal food things as invader threats.

After several messages back and forth, where she was clearly not understanding the problem and was asking me questions like, "Ah, gotcha, so can you avoid gluten until your lab work then?", and me responding that yes, of course I can avoid it, but that would not give me an accurate test result, she finally understood.   On the 18th, I will get the lab tests for all of the allergy-based issues she had initially wanted, and I will resume eating gluten so we can schedule the celiac panel in 6-8 weeks.    I am not looking forward to eating gluten again, but I do want the results of the test to be as accurate as possible.  

Thank you for the information on having other sensitivities or intolerances.  I have definitely noticed that.  I thought it was part of just "getting older" but I have noticed that eggs sometimes do not agree with me, as well as dairy.   Testing positive for a peanut allergy on the skin test last week really surprised me.  She prescribed me an epi-pen, just in case I would ever need it.  

[trents]

The hardest one for me has been developing an intolerance to eggs. I love eggs and have eaten them all my life. Now, I can still eat them in baked goods and have one for breakfast every few days as long as it's poached and I'm okay. But I can't eat more than one egg at a time and I can't eat them daily. I seem to tolerate them better when they are poached because the water in the poaching process has a hydrolysis effect on the protein and changes it to something more digestible for me. Yes, there is science to that.

[mspat3]

3 minutes ago, trents said:

The hardest one for me has been developing an intolerance to eggs. I love eggs and have eaten them all my life. Now, I can still eat them in baked goods and have one for breakfast every few days as long as it's poached and I'm okay. But I can't eat more than one egg at a time and I can't eat them daily. I seem to tolerate them better when they are poached because the water in the poaching process has a hydrolysis effect on the protein and changes it to something more digestible for me. Yes, there is science to that.

Yes, I was surprised about eggs as well.  I've eaten them my entire life, but within the last year or so, I became nauseous eating them and sometimes had stomach cramping.  I couldn't figure out why.  I just kept thinking every new digestive symptom was a part of getting older because I knew my older relatives and grandparents always had things they couldn't eat anymore. 

[LCAnacortes]

The uncontrolled, explosive diarrhea for me started more than 10 years ago. 
At first I thought I ate something bad but then it happened more and more. Within the last couple of years it got so bad that I could barely leave the house. It had to be a good day to go to the store. I kept a change of clothes with me.     
I have a rash around my neck that got worse and worse over the last 5 years. I also had eczema behind my ears. 
I was tired all of the time and borderline depressed. I had seen the information about celiac and thought there is no way since I am definitely not skinny.

I talked to my cousin at a reunion recently and she mentioned that her family had several members either diagnosed or have the DNA hallmark for it.  I am pretty sure my mom and grandma had it too. My mom had super bad edema.  I do too. My daughter is lactose intolerant. I was anemic in my 20's. I had miscarriages too - two early on and one in the 2nd term but also blessed with 2 kids. My daughter has issues too - endometriosis. 

So I decided that I don't care if I have it or not - gluten is not my friend.  It has been about a month now.  
My sugar cravings went away and I feel so much better. Much less gas, bloating etc.  It hasn't gone away completely but I know it should with time. I have been letting other family members know. 

Good luck with your journey!
 

[knitty kitty]

5 hours ago, LCAnacortes said:

The uncontrolled, explosive diarrhea for me started more than 10 years ago. 
At first I thought I ate something bad but then it happened more and more. Within the last couple of years it got so bad that I could barely leave the house. It had to be a good day to go to the store. I kept a change of clothes with me.     
I have a rash around my neck that got worse and worse over the last 5 years. I also had eczema behind my ears. 
I was tired all of the time and borderline depressed. I had seen the information about celiac and thought there is no way since I am definitely not skinny.

I talked to my cousin at a reunion recently and she mentioned that her family had several members either diagnosed or have the DNA hallmark for it.  I am pretty sure my mom and grandma had it too. My mom had super bad edema.  I do too. My daughter is lactose intolerant. I was anemic in my 20's. I had miscarriages too - two early on and one in the 2nd term but also blessed with 2 kids. My daughter has issues too - endometriosis. 

So I decided that I don't care if I have it or not - gluten is not my friend.  It has been about a month now.  
My sugar cravings went away and I feel so much better. Much less gas, bloating etc.  It hasn't gone away completely but I know it should with time. I have been letting other family members know. 

Good luck with your journey!
 

That rash around your neck could be Casal's Necklace caused by a deficiency in Niacin Vitamin B3. 

I had experienced the explosive uncontrollable diarrhea.  And I had Casal's Necklace.  I had Pellagra.  

Niacin deficiency causes the deficiency disease Pellagra.  The four stages of Pellagra are Diarrhea, Dermatitis, Dementia and Death.  Casal's Necklace is part of the dermatitis, as is eczema.  Casal's Necklace spawned the term "Redneck" to describe people lacking Niacin in their diet during the Great Depression of the thirties.  Casal's Necklace gets worse with exposure to the sun, as does the dermatitis on the arms, hands, feet and legs (gloves and boots of Pellagra).  You can Google images of these.

Celiac Disease damages the small intestine where vitamins and minerals are usually absorbed.  Diarrhea causes further vitamin depletion because the eight B vitamins are water soluble and easily flushed out of our systems.  Vitamin Deficiency symptoms can linger for years as our daily intake can fluctuate.  It's rare to have a deficiency in just one vitamin.  Thiamine Vitamin B1 is also quickly lost.  Thiamine deficiency symptoms include diarrhea, edema, fatigue, depression and either weight gain or weight loss.  

Supplementing with all eight essential B vitamins is warranted while our intestines are healing.  The B vitamins all work together, so taking a B Complex is beneficial.  Magnesium and thiamine work together.  

Here's more information about thiamine deficiency and weight gain.

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/#!po=49.4565

Checking for nutritional deficiencies is part of proper follow up care for Celiac Disease.  Whether you get diagnosed or not, do discuss with your doctor the benefits of supplementing with vitamins and minerals usually deficient in Celiac Disease.

[mspat3]

9 hours ago, LCAnacortes said:

So I decided that I don't care if I have it or not - gluten is not my friend.  It has been about a month now.  
My sugar cravings went away and I feel so much better. Much less gas, bloating etc.  It hasn't gone away completely but I know it should with time. I have been letting other family members know. 

Good luck with your journey!
 

It is the same with me--I'm definitely not a thin person. I'm morbidly obese. I've always had trouble with my weight since starting puberty around age 10, and I think I've tried nearly every diet during my life. My primary doctor keeps testing my thyroid because she looks at my food journals that I keep, and she cannot figure out why my weight won't come off. However, when I was eating gluten-free for one month prior to resuming it for testing, I did see the scale finally moving, and I had energy and so much less pain, and also the desire to want to move more.

Right now, I'm still eating gluten until I speak with my allergist on the 31st about the test results, but I am seriously considering not continuing with this gluten challenge. Like you said, gluten is not my friend either, and re-glutening in some ways has been worse than when I was eating gluten prior to going gluten-free the first time. Part of me would love to have the blood testing redone after the full 6-8 weeks so I have an accurate test result, one way or the other (celiac or NCGS), but as so many have said in these forums, the treatment is the same--cutting out all gluten. And I know I feel better when I do.

[trents]

2 hours ago, mspat3 said:

It is the same with me--I'm definitely not a thin person. I'm morbidly obese. I've always had trouble with my weight since starting puberty around age 10, and I think I've tried nearly every diet during my life. My primary doctor keeps testing my thyroid because she looks at my food journals that I keep, and she cannot figure out why my weight won't come off. However, when I was eating gluten-free for one month prior to resuming it for testing, I did see the scale finally moving, and I had energy and so much less pain, and also the desire to want to move more.

Right now, I'm still eating gluten until I speak with my allergist on the 31st about the test results, but I am seriously considering not continuing with this gluten challenge. Like you said, gluten is not my friend either, and re-glutening in some ways has been worse than when I was eating gluten prior to going gluten-free the first time. Part of me would love to have the blood testing redone after the full 6-8 weeks so I have an accurate test result, one way or the other (celiac or NCGS), but as so many have said in these forums, the treatment is the same--cutting out all gluten. And I know I feel better when I do.

You said, "Right now, I'm still eating gluten until I speak with my allergist on the 31st about the test results."

If you are suspecting celiac disease and being tested for it, please realize it is not an allergy. It is an autoimmune condition. Allergy testing cannot be used to detect it. It engages and entirely different pathway of the immune system than do allergies. What tests is you allergist running?

[mspat3]

Just now, trents said:

You said, "Right now, I'm still eating gluten until I speak with my allergist on the 31st about the test results."

If you are suspecting celiac disease and being tested for it, please realize it is not an allergy. It is an autoimmune condition. Allergy testing cannot be used to detect it. It engages and entirely different pathway of the immune system than do allergies. What tests is you allergist running?

My allergist added the celiac panel blood test into the order for allergy tests she was already ordering due to recent food allergies that suddenly popped up recently.  She said she was adding it in because I tested positive for wheat during my skin prick test, and I told her during that first appointment that eating a gluten-free diet had resolved many symptoms I'd had for 20 years, believing I had IBS.  Knowing the test was added to my normal allergy blood work, I added gluten back into my diet for 10 days prior to the test, and I am still eating gluten until she and I discuss the blood work results on May 31st.  

Ultimately, my question to her is whether she will be willing to re-run this celiac panel in late June when I have 6-8 weeks of gluten under my belt.  Either way, I will need to find a gastroenterologist, and I will be discussing my issues with that specialist as well.  

I know beyond a shadow of a doubt that I have a gluten sensitivity.  Still, I would like to know if I have celiac disease as well, if possible.  My only hesitation in prolonging the gluten-eating is that this gluten challenge is hitting me harder than it did before I experimented going gluten free.  It has truly been a "challenge".   I also don't know if my medical insurance company will pay for two tests so close together.  That may be an issue also.  

[trents]

Celiac disease antibody home test kits are available online. Imaware is one company that offers them. About $100 I think. If your insurance won't cover another doctor-ordered  test so soon you might look into it.

[mspat3]

Just now, trents said:

Celiac disease antibody home test kits are available online. Imaware is one company that offers them. About $100 I think. If your insurance won't cover another doctor-ordered  test so soon you might look into it.

Thank you!  I will definitely look into that.  

[LCAnacortes]

18 hours ago, knitty kitty said:

That rash around your neck could be Casal's Necklace caused by a deficiency in Niacin Vitamin B3. 

I had experienced the explosive uncontrollable diarrhea.  And I had Casal's Necklace.  I had Pellagra.  

Niacin deficiency causes the deficiency disease Pellagra.  The four stages of Pellagra are Diarrhea, Dermatitis, Dementia and Death.  Casal's Necklace is part of the dermatitis, as is eczema.  Casal's Necklace spawned the term "Redneck" to describe people lacking Niacin in their diet during the Great Depression of the thirties.  Casal's Necklace gets worse with exposure to the sun, as does the dermatitis on the arms, hands, feet and legs (gloves and boots of Pellagra).  You can Google images of these.

Celiac Disease damages the small intestine where vitamins and minerals are usually absorbed.  Diarrhea causes further vitamin depletion because the eight B vitamins are water soluble and easily flushed out of our systems.  Vitamin Deficiency symptoms can linger for years as our daily intake can fluctuate.  It's rare to have a deficiency in just one vitamin.  Thiamine Vitamin B1 is also quickly lost.  Thiamine deficiency symptoms include diarrhea, edema, fatigue, depression and either weight gain or weight loss.  

Supplementing with all eight essential B vitamins is warranted while our intestines are healing.  The B vitamins all work together, so taking a B Complex is beneficial.  Magnesium and thiamine work together.  

Here's more information about thiamine deficiency and weight gain.

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/#!po=49.4565

Checking for nutritional deficiencies is part of proper follow up care for Celiac Disease.  Whether you get diagnosed or not, do discuss with your doctor the benefits of supplementing with vitamins and minerals usually deficient in Celiac Disease.

Actually when I got thinking about it the rash wasn't just around my neck - it was in other personal areas too.  I have been taking several supplements - a good B complex etc. but I'm going to have my vitamin levels tested in case I'm not taking enough. My doctor retired so I'll be starting over there. 

[knitty kitty]

11 hours ago, LCAnacortes said:

Actually when I got thinking about it the rash wasn't just around my neck - it was in other personal areas too.  I have been taking several supplements - a good B complex etc. but I'm going to have my vitamin levels tested in case I'm not taking enough. My doctor retired so I'll be starting over there. 

Yes, it can occur there, too.  Riboflavin deficiency is bad to cause a rash in the nether regions, as well.  

If you get tested for vitamin deficiencies, you need to be off of supplements for six to eight weeks.  Otherwise, you'll just be measuring the supplements you've been taking.  Blood tests are not really an accurate measurement of vitamin deficiencies because the vitamins are used inside the cells of tissues and organs.  The body keeps a certain amount of vitamins in the blood to feed the brain and important organs like the heart, but the tissues may have a functional deficiency.  

The World Health Organization decided that if an improvement in health was seen after giving 500 mg of thiamine hydrochloride for several days, a thiamine deficiency could be diagnosed.  (This exemplifies how inaccurate and costly vitamin deficiency tests can be.)

The B vitamins are water soluble.  Any excess is excreted easily in urine.  There's no toxicity limit.   

 

[knitty kitty]

On 5/26/2022 at 6:12 AM, mspat3 said:

It is the same with me--I'm definitely not a thin person. I'm morbidly obese. I've always had trouble with my weight since starting puberty around age 10, and I think I've tried nearly every diet during my life. My primary doctor keeps testing my thyroid because she looks at my food journals that I keep, and she cannot figure out why my weight won't come off. However, when I was eating gluten-free for one month prior to resuming it for testing, I did see the scale finally moving, and I had energy and so much less pain, and also the desire to want to move more.

Right now, I'm still eating gluten until I speak with my allergist on the 31st about the test results, but I am seriously considering not continuing with this gluten challenge. Like you said, gluten is not my friend either, and re-glutening in some ways has been worse than when I was eating gluten prior to going gluten-free the first time. Part of me would love to have the blood testing redone after the full 6-8 weeks so I have an accurate test result, one way or the other (celiac or NCGS), but as so many have said in these forums, the treatment is the same--cutting out all gluten. And I know I feel better when I do.

Weight that won't shift is often indicative of Thiamine deficiency.  You really should read this article as it explains how eating a heavy carbohydrate diet can result in an insufficiency of thiamine which causes additional fat storage...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/#!po=49.4565

Substituting a gluten free high carbohydrate for a gluten containing high carbohydrate diet is not going to improve one's weight.

Thiamine is needed to turn carbohydrates, fats and proteins into energy for our bodies.  If there's an insufficiency of Thiamine, in order to save what little thiamine is available, the body stores that energy as fat.  

I was morbidly obese and could not shift any weight at all.  I started following the Autoimmune Protocol diet (Dr. Sarah Ballantyne, a Celiac herself, developed this diet which has been scientifically proven to promote healing in Celiac Disease.)  I supplemented with a B Complex and high dose Thiamine.  My weight melted away. 

[mspat3]

1 hour ago, knitty kitty said:

I was morbidly obese and could not shift any weight at all.  I started following the Autoimmune Protocol diet (Dr. Sarah Ballantyne, a Celiac herself, developed this diet which has been scientifically proven to promote healing in Celiac Disease.)  I supplemented with a B Complex and high dose Thiamine.  My weight melted away. 

Thank you so much for this information.  I will be looking into this today.  I have been hearing a lot about the AIP diet also, but I haven't really read into the details yet.  I did recently place an order with an online AIP-friendly market as I was trying to figure out what was happening to my digestion and thought maybe it was food additives that were making me so sick.  I ordered some condiments (mayo, ketchup made with AIP ingredients.  The ketchup was made with carrots, which I thought was pretty creative.) I know gluten is a problem, but it wouldn't surprise me if that weren't the only issue I need to correct.  Thank you, Knitty Kitty!