Do I Have Celiac And Best Test

[WhatsTheDealiac]

Hello.

I am a male, 36 years of age, and believe I have had celiac disease for 15 to 20 years. It started with brain fog, as far as I can remember, then came stomach problems, and loose stools about 99 percent of the time. Also, around the time I remember having stomach problems, i started having crazy sensitivity to sunlight, and I keep developing more and more floaters. The sensitivity is bad enough that, if I look out into the distance, I will start to cry from how unbearable it is.

 

For my stomach problems, I typically go to the bathroom the morning, and it is quite loose. It is typically once a day, but happens 2 or 3 times a day, on occasion.

 

Last month, I started getting a horrible itch on my anus, with bad itching on my scrotum and inner thighs. Around this same time, I got what I believe to be dermatitis herpetiformus under both my knees caps, on the front of both legs, as well as a bumpy rash near my armpits, on the underside of both arms. It hasn’t gone away  

I went gluten free 3 days ago. Since then, the only stabbing pain I got was when I exercised one day, which was accompanied by some serious gurgling. I have not gone to the bathroom yesterday and today, but I went 3 times on day 1 of gluten free. The day I went to the bathroom 3 times, I think I had anal fissures. I had a horrible pain when trying to wipe. The pain is not there, now, since I have not gone to the bathroom yesterday and today.
 

My questions are…

Do my symptoms sound like celiac disease to you? If so, what is my best approach for diagnosis. I don’t have health insurance right now, but would pay out of pocket for a colonoscopy and endoscopy, if need be.

My father mentioned getting an at home test to start. He also thought it would be a good idea to test for other food allergies. Do you think it is good to start with an at home test? If so, which test is a good choice?
 

I am looking forward to learning on this forum. Thanks, everyone. 

[plumbago]

Hi there,

Your derm problems, yes, could be DH (dermatitis herpetiformus), or something else - we'll likely need more information. Passing hard stools can cause tears in the thin lining of the anus, not fun, and I'm sorry to hear that. As for testing, you say you'd pay out of pocket for a colo EGD, but why not start with blood tests which will be far less expensive? The thing with those, though, is you do need to be consuming gluten. Some say 1-2 slices of gluten containing bread a day for at least 2 weeks should suffice. In general, the advice is not to go on a gluten free diet until a diagnosis is made, to ensure a more accurate test reading.

Sometimes celiac disease can cause nerve issues and it may be possible that photophobia is one of them.

At any rate, starting with a Celiac panel of tests is your best bet, and given what you've told us, I think it's smart to go ahead and do that.

I am not familiar with any at home tests, so I couldn't recommend any for you. But you can either get your doc to order the Celiac panel or you can do it yourself through various labs in the US like Lab Corp, Quest - and order-your-own-lab tests sites which are popping up with greater frequency now.

Keep in touch.

Plumbago

Edited August 22, 2022 by plumbago

[trents]

The Mayo Clinic guidelines for a pretest gluten challenge leading up to a serum antibody test are the daily consumption of two slices of wheat bread (or the equivalent) for 6-8 weeks and for the endoscoy/biopsy the same amount of gluten for two weeks. Since you have only been attempting the gluten free diet for a few days, now would be the time to put that on pause until all testing is complete. I believe the company name you hear most often in relation to celiac at home test kits is Imaware. It costs about $100 US. You just prick your finger to get a blood sample and send the sample off for evaluation.

If you also want to schedule an endoscopy/biopsy I would do that now because it might take weeks to get on the procedure schedule. You can always cancel. Good luck in trying to get that arranged without insurance. My experience is you will get turned down as it doesn't fit within how the system operates and there would also be liability concerns on the part of the doctor.

Do you have walk-in quick clinics where you live? That might be another option, at least for getting serum antibody tests done. Go armed with information about what antibody tests you want done as most GPs are woefully uninformed about celiac disease and testing. Many of them don't know enough to warn you not to start the gluten-free diet before testing.

Many of your GI symptoms accord with celiac disease. About the rash, DH has a specific appearance with little blisters. But the fact that your GI issues have lessened on a gluten-free diet may say something. Brain fog is a classic symptom of celiac disease. But you could also have NCGS (Non Celiac Gluten Sensitiity) which shares many of the same symptoms with celiac disease and is 10x more common than celiac disease. No test for it, however. A celiac disease must first be ruled out.

As far as light sensitivity and floaters, that may be due to something else. Do you have migraines with the light sensitivity?

By the way, welcome to the forum, WhatsTheDealiac!

[WhatsTheDealiac]

Thanks for the replies, everyone. What test, specifically, should I ask for, when I I go to the doctor? Do you think it’s worth doing a home test, or should I just get the test from the doctor?

 

I forgot to mention…. I went to the doctor a few months ago, and they recommended a colonoscopy and endoscopy. The problem is that doctors make lots of money doing those procedures, so going that route is in their best interest. I want to go the route that is in my best interest, first.

 

Since I have only been going gluten free for a few days, if I start eating gluten again for a few days, will these tests pick up an issue, or do I need to start eating gluten, again, for awhile before doing them?

 

Thanks!

[plumbago]

You need to be eating gluten for more than a few days before the tests. As the person replying to you after me said, the amount of time is actually 6-8 weeks for a blood test, not 2 weeks. And yes, go ahead and start eating gluten now.

As for the tests, this is a good site to check out:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

And here is a primer I put together for myself years ago which you should be able to enlarge.

For me, doing the blood tests at a lab rather than home tests would be my first choice, by far. More reliable I would think.

Plumbago

[WhatsTheDealiac]

18 minutes ago, plumbago said:

You need to be eating gluten for more than a few days before the tests. As the person replying to you after me said, the amount of time is actually 6-8 weeks for a blood test, not 2 weeks. And yes, go ahead and start eating gluten now.

As for the tests, this is a good site to check out:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

And here is a primer I put together for myself years ago which you should be able to enlarge.

For me, doing the blood tests at a lab rather than home tests would be my first choice, by far. More reliable I would think.

Plumbago

Thanks for the response. So you are saying, even though I have eaten gluten my whole life, that since I stopped for 3 days, I need to eat gluten for 6 to 8 weeks to make sure. You think the 3 days off would be enough to ruin the test?

[plumbago]

I see what you're asking: you've stopped eating gluten for a total of three days, does that mean the clock starts at 0 now and you have to eat gluten for 6 more weeks. That's a good question. Honestly, I don't know, I'm sorry.

[trents]

I believe your three day interruption will not materially affect the outcome of testing. Just don't go gluten-free any longer right now until all testing is complete.

I would ask the physician to run at least: 1. Total IGA, 2. tTG-IGA and 3. Deamidated gliadin peptide (DGP IgA and IgG). The EMA test would be nice to have as well but it is an expensive test and not very sensitive. However, if the EMA is positive, it's a pretty sure bet you have celiac disease. Whatever, you want to get more than just the tTG-IGA which is all many physicians know about and all they will order. But it misses 20% of people who actually do have celiac disease.

[WhatsTheDealiac]

19 minutes ago, trents said:

I believe your three day interruption will not materially affect the outcome of testing. Just don't go gluten-free any longer right now until all testing is complete.

I would ask the physician to run at least: 1. Total IGA, 2. tTG-IGA and 3. Deamidated gliadin peptide (DGP IgA and IgG). The EMA test would be nice to have as well but it is an expensive test and not very sensitive. However, if the EMA is positive, it's a pretty sure bet you have celiac disease. Whatever, you want to get more than just the tTG-IGA which is all many physicians know about and all they will order. But it misses 20% of people who actually do have celiac disease.

Thanks to both of you. Even specialists typically  only order the one that misses 20% of people?

How much would those three tests run out of pocket, do you think?

Is a biopsy of the small intestine a sure thing?

[plumbago]

Using the suggestions posted thus far, look on some sites and plug in the tests recommended to get prices. Offhand, two sites I know of are Ulta Labs and Request a Test.

You may also be able to search directly on Lab Corp and Quest.

Plumbago

[trents]

19 minutes ago, WhatsTheDealiac said:

Thanks to both of you. Even specialists typically  only order the one that misses 20% of people?

Gastroenterologists are more likely to order a more comprehensive celiac antibody panel. But you should ask anyway. Be politely assertive and don't assume anything. The tTG-IGA test is an inexpensive test that combines good sensitivity with good specificity so that is why it is so popular.

How much would those three tests run out of pocket, do you think?

I have no idea. If you went with a home test kit by Imaware it costs about $100 US but I don't know what tests they run. I do know Imware includes more than just the tTG-IGA.

Is a biopsy of the small intestine a sure thing?

It pretty much is if it is done correctly and thorough sampling is done. By thorough I mean at least 4 samples from both the duodenum and the duodenum bulb of the small bowel. Damage from celiac disease can be patchy, especially in the early stages of the disease, and is not infrequently missed by scopers who don't do a thorough job. Some people have an epidermal expression of celiac disease known as dermatitis herpetiformis (DH) and a small percentage of those folks don't have damage to the small bowel at all.

 

[RMJ]

Here is an example of a very comprehensive panel that you can order online from walkinlab.com, then go to a Labcorp site for the blood draw.  It is $330. If you click on “sample report” you can get more detail. Depending on where you live, you may or may not be able to do this (I’m assuming you are in the US).

Comprehensive celiac panel

If you want to spend less, or if there is no Labcorp blood draw site but there is a Quest site, you could order the following three.  You would be missing the TTG IgG, which is rarely the only positive unless you’re deficient in total IgA, and the EMA, which measures the same molecule as the TTG IgA.  The total IgA is included because occasionally people with celiac are very low in total IgA and thus don’t show positive on the specific IgA tests.  

TTG IgA

Deamidated gliadin peptide antibodies

Total IgA

[WhatsTheDealiac]

3 hours ago, RMJ said:

Here is an example of a very comprehensive panel that you can order online from walkinlab.com, then go to a Labcorp site for the blood draw.  It is $330. If you click on “sample report” you can get more detail. Depending on where you live, you may or may not be able to do this (I’m assuming you are in the US).

Comprehensive celiac panel

If you want to spend less, or if there is no Labcorp blood draw site but there is a Quest site, you could order the following three.  You would be missing the TTG IgG, which is rarely the only positive unless you’re deficient in total IgA, and the EMA, which measures the same molecule as the TTG IgA.  The total IgA is included because occasionally people with celiac are very low in total IgA and thus don’t show positive on the specific IgA tests.  

TTG IgA

Deamidated gliadin peptide antibodies

Total IgA

Thanks to both of you.

I’m confused. Why do I need the walkinlab site, if LabCorp tests for this stuff, and I would be going to LabCorp, anyway?

[WhatsTheDealiac]

Also, how does this site become like a physician and be able to request testing?

I tried to order a gluten test directly through LabCorp earlier, but they said a physician had to request it. 

[trents]

Just now, WhatsTheDealiac said:

Also, how does this site become like a physician and be able to request testing?

I tried to order a gluten test directly through LabCorp earlier, but they said a physician had to request it. 

This is what you will run into anytime you try to circumvent health insurance contracts with an offer to pay private. I think you will find that any medical establishment that contracts with third party payers, either the government or managed care, will not accept private money. That may be controlled by contractual agreements or by federal/state regulations. But I could be wrong. So, I think your best bet will be Imaware or some other independent company offering home test kits.

[WhatsTheDealiac]

5 minutes ago, trents said:

This is what you will run into anytime you try to circumvent health insurance contracts with an offer to pay private. I think you will find that any medical establishment that contracts with third party payers, either the government or managed care, will not accept private money. That may be controlled by contractual agreements or by federal/state regulations. But I could be wrong. So, I think your best bet will be Imaware or some other independent company offering home test kits.

Thanks. I actually called LabCorp directly and I was told that a physician had to order it.

Perhaps if I use one of these sites to request it, like walkinlab, I will be fine.

The home test might be enough, though. It’s hard to say, since I’m new to this, and don’t know the processes of each option.

[RMJ]

1 hour ago, WhatsTheDealiac said:

Thanks to both of you.

I’m confused. Why do I need the walkinlab site, if LabCorp tests for this stuff, and I would be going to LabCorp, anyway?

Walkinlab will have a physician who’s name will be on the order, even though he has never seen you or talked to you.  I’ve used walkinlab.com several times, when my gastroenterologist only liked to test me once a year.

[plumbago]

It's really not that complicated, people do it all the time. I do it all the time. You can go to my Quest and order labs or you can go to LabCorp on demand and order labs, or one of the three other sites offered to you so far. People do this all the time; it's not complicated. You just have to pay yourself.

https://www.ondemand.labcorp.com/

[WhatsTheDealiac]

Thanks.

I wonder why certain ones have to be ordered by a physician and others don’t, and why it seems to differ between different lab companies.

Either way, thanks for all the info.

I went back on gluten tonight. I had a whole chipotle burrito 2 hours ago. Nothing real crazy has happened yet. I wonder how I will feel in a couple days, when I’m still eating gluten? It will be interesting to see. I am going to wait 6 to 8 weeks to run the test  

 

 

[Kate333]

They ONLY way to get a definitive celiac disease diagnosis is via TTG/IgA blood test and endoscopy.  Otherwise, you are just asking non-medical laypeople to speculate.  I wouldn't rely on that if I were you.  

[trents]

I would suggest getting more than the tTG-IGA test ordered. It misses 20% of those of white European decent and a recent study showed it misses 80% of blacks with celiac disease (confirmed by biopsy in both race scenarios). The extra tests can often catch those who don't test positive on the tTG-IGA. But yes, the biopsy is more reliable.

Edited August 23, 2022 by trents

[WhatsTheDealiac]

I am definitely getting a test. I am going to get an at-home test, or a test in a lab. I just need to do my 6 to 8 weeks of gluten.

If endoscopy and biopsy are the end game, though, why not skip testing and just do that? Will the test results change anything, as far as doing the biopsy?

For example, if I test negative on the whole gamut of blood tests for celiac, should I give up on the celiac idea, or get the endoscopy, anyway?

If the results are positive that I have celiac on the blood tests, aren’t you guys going to recommend the endoscopy, at that point?

[trents]

If you can find someone who will do it, yes, I would skip the antibody tests and go straight for the biopsy. We wouldn't necessarily recommend a biopsy if your antibody tests were strongly positive but your physician likely would. You only have to be on gluten for two weeks for the biopsy so that's another advantage.

[plumbago]

Personally, I would not skip the blood tests. I followed the traditional diagnostic route of blood tests then biopsy and I'm glad I did because all doubt was removed.

If you skip the labwork and the biopsies show no villi blunting then there will be some doubt and the path will not be so clear. Whereas if you do the blood tests and they show positive but the biopsies are negative, you will have more of an answer and more information. Further - and to me this is key - blood tests provide a baseline for the future.

(Multiple perspectives are some of the problems when we discuss issues on the Internet!)

Plumbago

[trents]

Plumbago makes a good point. We occasionally get forum participants who get positive tests either in the antibody testing or the biopsy, but not both for whatever reason. Two testing methods gives you more data whereas with only one, something might be missed. But if you are one of those people who get intolerably sick when going back on gluten and you have the means to do so, the biopsy offers a shorter gluten challenge and is considered to be the most reliable testing method.