Geting tested/diagnosed during covid

[Lemons111]

Hello to all of you,

Over the past two months or so, I started experiencing GI symptoms on-and-off, and then pretty much every day, getting worse and worse. It seemed like every time I ate something, I started getting stomach pain, bloating, gas, heartburn, etc. I also kept getting anxious that I was actually in the early stages of corona because of other things like feeling extremely fatigued for no good reason, having night sweats, and feeling that my face was flushed. Luckily corona was not the issue, but after reading a lot about celiac I realized that all the symptoms I was having seemed to happen after eating gluten specifically, and that many of them are common for celiac. I've never had any health problems, but from what I understand, you can get celiac at any time in your life. Of course, it's a little presumptuous of me to assume I have it, but I think getting tested would give me peace of mind either way. I'm a university student, so I have to go through my school's student health center, and I know from experience that they are extremely dismissive and reluctant to give referrals/tests, probably because they assume that any young person with no medical history is totally fine. I'm sure that's even worse now since most things are through telehealth appointments, and they have to take all kinds of precautions for in-person visits. I also don't have a lot of experience talking to doctors, and I tend to get anxious and clam up when talking about my symptoms. Does anyone have advice on how to get tested/diagnosed? Is it possible that this is something else and I'm just overreacting? Any advice is appreciated. 

[trents]

Another approach would be to eliminate gluten totally from your diet as a trial and see if the symptoms disappear. It's not a matter of cutting down on gluten. You would need to be totally committed to eliminating gluten from your diet and any supplements you may be taking. You would need to educate yourself as to how gluten is hidden in prepackaged foods and be aware of cross contamination issues such as a burger patty being cooked on a grill where cheese sandwiches are also being cooked or fries in a lard vat where breaded fish patties are also cooked. Dining out is for many Celiacs the greatest risk for gluten exposure. Even if you were tested and found to have celiac disease you would need to walk down the same road as I have outlined. 

The onset of celiac disease can indeed happen at anytime in life. It takes a genetic predisposition to the disease (we now know where the genes are) but also some environmental trigger that awakens the latent potential for the disease and causes those genes to be expressed. We think the environmental trigger may be some kind of physiological stress event like a viral infection or maybe antibiotics that change the microbiology of the gut. We know that many people who have the genes for celiac disease never develop the disease.

Edited August 14, 2020 by trents

[knitty kitty]

Lemons11, 

You need to stay on a gluten containing diet for right now.  Celiac Disease causes our bodies to make antigens to gluten.  These anti-gluten antigens can be measured with a variety of blood tests.  If you stop eating gluten, your body will quit making the antigens and the blood tests won't be accurate.  Be sure to ask for the full panel of tests.

This article is helpful.

If you go off gluten now, and later resume consuming gluten for a gluten challenge and endoscopy, be aware you may have worse reactions and symptoms than you're having now.  There's also a possibility the gluten challenge won't be long enough to elicit detectable changes necessary for diagnosis.  It may take a while for your immune system to ramp up again to the point it is now.

An alternative is to have a genetic test done to see if you carry any genes specific to Celiac.  Just because you have the genes may not mean the genes are turned on and causing active Celiac Disease.  But if you have the genes and respond well to a gluten free diet, that may be indicative of Celiac Disease.  

But a doctor may want to do an endoscopy to rule out other things that could be causing gastrointestinal distress such as ulcers or gastritis or worse, and to do a biopsy to evaluate intestinal damage.  Again, endoscopy needs to be done before you eliminate gluten from your diet, because the intestinal damage might not be as apparent if you're gluten free and resuming gluten consumption can be awful.    

Celiac Disease is the only disease I know where the medical professionals want you to keep hurting yourself in order to make a diagnosis.  

It really depends on the doctor, the doctor's familiarity and expertise in diagnosing Celiac, and availability of non-Covid procedures.  

Write down all your questions.  

Write down all your symptoms. (Keep a food/mood/poo'd journal and take that with you to your appointment.) 

Print out the above article.  And take all of these with you or email to health center.  

Keep copies of your test results.  

Keep us posted on your journey!

 

[trents]

But Lemmons111's concern is that he may not be able to get testing authorized. I agree that if he can arrange for that soon, he should continue to eat gluten in the short run. But if he can't, a gluten free trial diet is the alternative. I wouldn't want him to suffer for months until a COVID vaccine is developed. And it has always been a valid approach for people who suspect they have gluten issues but don't want to or don't have access to the testing to get a diagnosis prior to going gluten-free.

Edited August 14, 2020 by trents

[knitty kitty]

But Lemons11's symptoms can cover so many things, I don't think the health center would turn him away from at least a telehealth appointment, especially if he's got all his homework done (complete list of symptoms, food diary, etc.) which makes it easier on the health care workers.  

There are home test kits for Celiac (stool, genetic, etc.) that might be an option both for the health center and also if Lemons11 wants to pursue Celiac testing on his own.  

Trents, I misunderstood and thought you were saying for Lemons11 to skip right to going gluten free.  You gave good advice for when he does go gluten free.

I was answering Lemons11's question about getting diagnosed.

"Does anyone have advice on how to get tested/diagnosed?"

 

[GFinDC]

Quest Diagnostics has a ttg IgA test they do.  It's pay as you go type thing so maybe could be done without the university getting involved.   The ttg IgA test is only one of the antibody tests for celiac disease though.  There are also DGP IgA and DGP IgG tests plus total serum IgA and possibly EMA in the full celiac disease panels.  Someone may know another lab that does those additional blood tests.

https://questdirect.questdiagnostics.com/products/f2a0896b-22ad-4299-af26-411667b4ce7b 

If you can get the full celiac disease test panel done somewhere that would be better.  Some people don't make much IgA so the IgA tests are useless for them.  Writing down your symptoms before going to the Dr is a good idea.

You could have something else.  Celiac disease is confusing to identify just by symptoms because it can cause so many varied symptoms in seemingly unrelated areas of the body.  One of the possible symptoms is vitamin / mineral deficiencies which can develop over time.  So another possible indicator is being low on vitamins or minerals and also low on cholesterol in some cases.  These kind of deficiencies might not show up until some time has passed and gut damage has occurred.

Your symptoms do sound like possible celiac disease but they could be other conditions also.  Celiac is an autoimmune condition and it may be helpful to check with relatives who may have other AI conditions.  AI conditions can cluster in families since they are gene related.  Try a search on "celiac disease related condition" or "celiac disease associated condition" to learn more.

If a lot of your blood relatives have AI conditions that makes it more likely you have or could get an AI condition too.

[cyclinglady]

My daughter is at a UC school.  She recently used the University Health center via Teleconference.  She really liked her doctor and was able to choose based on the doctor bios.  She can choose another doctor if she wants.  She can also go for a physical appointment, if needed.  Another option is to go outside the network but it is a bit more costly.  The U C plan is administered through a nationwide heath insurer.   Talk to your parents.  If your University insurance is not for you, you can probably opt out and get other insurance (at least in California) or use your parent’s.    The university just wants you to have insurance.  
 

If you are living on campus (dorm), it will be easier to maintain a gluten-free diet if you have a celiac disease diagnosis.  You will have some protection as a disability.    You should investigate all your options.  And what if it is not celiac disease?  
 

Talk to your parents or make a teleconference appointment at the healthcare center  to start.  Try letting them help you.  You are paying for it.   Be assertive and prepared (research)   Take notes.    Ask for the celiac panel.  If you are home (online learning due to the pandemic), have your parents or a friend sit in on the call for moral support.) Consider other options if it does not work out.  But do not set yourself up for failure.  

 

 

Edited August 14, 2020 by cyclinglady

[Kate333]

Hi Lemons111.  I suggest a home gluten antibody blood test.  It will save you the wait/university red tape.  But, as others here say, you may need further exam (EGD with biopsies) to confirm or rule out celiac disease.  If the blood test positive for G, at least you will have a piece of paper (test results) to use to help support a referral to a gastro specialist who can check for celiac disease or other issues (IBS for example).

And thanks GFinDC for providing that home test kit info!   I assume it can be ordered online?  Is a doc's referral required to order the home kit?  

Although my PCP and lab are pretty good about ordering and scheduling tests, my lab facilities (Kaiser Hosp.) always seem very crowded.  I'd much prefer the home test option for convenience, CV risk reduction, and to help free up staff to focus on CV cases.

[GFinDC]

3 hours ago, Kate333 said:

Hi Lemons111.  I suggest a home gluten antibody blood test.  It will save you the wait/university red tape.  But, as others here say, you may need further exam (EGD with biopsies) to confirm or rule out celiac disease.  If the blood test positive for G, at least you will have a piece of paper (test results) to use to help support a referral to a gastro specialist who can check for celiac disease or other issues (IBS for example).

And thanks GFinDC for providing that home test kit info!   I assume it can be ordered online?  Is a doc's referral required to order the home kit?  

Although my PCP and lab are pretty good about ordering and scheduling tests, my lab facilities (Kaiser Hosp.) always seem very crowded.  I'd much prefer the home test option for convenience, CV risk reduction, and to help free up staff to focus on CV cases.

Hi Kate,

Yes, you order it online, but then I think you go to a local hospital or clinic to have the blood drawn.  I don't think they would send someone to your home for that price.  Medical people tend to be well paid.  I am pretty sure there are other labs that offer online test ordering too.  There is a Biocard test that is home done also.  But you'd have to order it through Canada last i knew.

 

The imaware home test looks good too.

https://www.imaware.health/at-home-blood-test/celiac-disease-screening?utm_campaign=IMAWARE_10_OFF_44992ef1&campaignid=2036097976&adgroupid=71681021693&adid=355669861887&gclid=Cj0KCQjw7Nj5BRCZARIsABwxDKI62dEHlSjoGFVHpx9We-BrKY12bGMjfDWMm0JeewW1tuc3yO8RlSoaAqNSEALw_wcB

Edited August 14, 2020 by GFinDC

[Kate333]

Thanks GFinDC!  I will check those other companies.  It would be nice to have more home test options as this pandemic drags on.  Stay safe!  

[DJFL77I]

been trying to make an appointment with primary care dr's ..  its like they all only do tele health now

[Lemons111]

I decided to go back to a normal, gluten containing diet so tests would be accurate. I was back eating gluten every day for a month before I got tested (today, actually), and my transglutaminase IgA was <0.5 and deaminated gliadin IgA was 0.2. I was also tested for calcium and TSH, both of which were normal. So, I guess it's back to the drawing board... The only thing that bothers me is, as soon as I started eating gluten again, I noticed bad joint pain. But based on those results, it's probably a coincidence and being caused by something else. From what I understand, with numbers that low, Celiac would be virtually impossible. Thanks for all your comments and advice before, all. 

[trents]

I'm not sure that going back on gluten for only a month would be long enough to give valid test results. Seems like people on the forum are advocating about 3 months.

[Lemons111]

9 hours ago, trents said:

I'm not sure that going back on gluten for only a month would be long enough to give valid test results. Seems like people on the forum are advocating about 3 months.

I had been eating gluten on and off for about a month (rather than regularly) from the end of July to August, and the only time I really cut it out completely was for one week from the end of August to the beginning of September. That's when I noticed the joint pain, like I said, but the doctor I saw made it seem like it's rare for that to come from celiac, as well as having predominately constipation instead of diarrhea, which has been true for most of this month. I'm not convinced that it's totally unrelated, so I'm thinking about going back to being gluten free again and seeing if my hands stop hurting so much!! Agh!!

 

[cyclinglady]

The most  important thing in life is good health.  For you, next is probably your studies.  If gluten free helps your joint pain, then I would considering going gluten free until you finish your education.   There is a condition called non-celiac gluten sensitivity.  There just is not a test for it.  It is usually diagnosed by eliminating celiac disease and trialing the diet.  Of course there are other autoimmune disease that affect both joints and the GI tract.  You can investigate those if the gluten-free diet does not work.  
 

Good luck with your studies!  

[DebJ14]

On 10/1/2020 at 8:32 AM, Lemons111 said:

I had been eating gluten on and off for about a month (rather than regularly) from the end of July to August, and the only time I really cut it out completely was for one week from the end of August to the beginning of September. That's when I noticed the joint pain, like I said, but the doctor I saw made it seem like it's rare for that to come from celiac, as well as having predominately constipation instead of diarrhea, which has been true for most of this month. I'm not convinced that it's totally unrelated, so I'm thinking about going back to being gluten free again and seeing if my hands stop hurting so much!! Agh!!

 

Sadly, your doctor is not up on the latest information.  Gluten is known to cause joint pain and constipation is common.  We get joint pain because the gluten destroys the tight junctions in our intestines and causes leaky gut.  The undigested gluten proteins (and others) migrate throughout our body.  If they go to the brain you can have psychological issues, if they go to the joints you end up with joint pain, to the skin and you get rashes. 

 I was taken to the gastro at an early age because of severe constipation.  This was back in 1962.  He never considered celiac because I did not have diarrhea and all his tests were on the colon, not small intestine and they never did any blood tests.  As a result, I was misdiagnosed over and over until the age of 54. 

Even though there is a letter in my file from a dermatologist in 1966 stating that I was diagnosed with dermatitis herpetiformis, I was never told to stop gluten, just offered steroid cream.  The connection between the two was not made until 1967, and none of my doctors who saw the file ever made the connection.

I would find a new doctor who is up on the latest research!  I didn't and paid the price until I was properly diagnosed in 2007.

[Lemons111]

I'm back in this thread bc I went back to not eating gluten for almost a month now after going to the doctor, and I was still having a lot of problems with heartburn and soft, orangey poop. Joint pain was less frequent but still occurred a couple times. I think I was probably getting cc'd this whole time but I was trying my best so idk. Lactose and possibly tomatoes seem to be bothering me. 

So, I went back to thinking that maybe something else is causing this like a food allergy that I don't know about or I don't know what. I ate one cookie on Sunday and I had joint pain again soon after, now it's been about 72 hrs and I'm having a rash and joint pain. I definitely noticed a rash before but I didn't keep track of it so I don't know if it could be triggered by something else. It was also still showing up while I was gluten free, but it went away recently only to come back now, like I said. They are small fluid filled bumps, but it doesn't look anything like the gross images that come up on google when you search DH. Is it possible to have a delayed reaction to gluten like this? Does anyone know if it is possible for a food allergy to be delayed like this? I also felt extremely tired for the past two days, but I attributed that to being on my period. My GI symptoms didn't get any worse or better.

I also have one last question, sorry for the super long post: Since I wasn't off gluten for long before I had essentially a month long challenge before getting tested, would my antibody levels really drop that fast if I had celiac, and if they did, wouldn't a month of eating bread be long enough to restore them? It seems like it takes many people several months to see a change. Idk what to do anymore. I'm feeling really frustrated and I still definitely think there is a connection to my symptoms and eating gluten. I have another appointment w/ my GI doctor in April so at this point I'm prepared to stay gluten-free until then and then do another gluten challenge and beg for an endoscopy despite my negative results.   

[trents]

When going back on gluten for testing I think a minimum of six weeks of daily significant gluten consumption is recommended.

[DebJ14]

1 hour ago, Lemons111 said:

I'm back in this thread bc I went back to not eating gluten for almost a month now after going to the doctor, and I was still having a lot of problems with heartburn and soft, orangey poop. Joint pain was less frequent but still occurred a couple times. I think I was probably getting cc'd this whole time but I was trying my best so idk. Lactose and possibly tomatoes seem to be bothering me. 

So, I went back to thinking that maybe something else is causing this like a food allergy that I don't know about or I don't know what. I ate one cookie on Sunday and I had joint pain again soon after, now it's been about 72 hrs and I'm having a rash and joint pain. I definitely noticed a rash before but I didn't keep track of it so I don't know if it could be triggered by something else. It was also still showing up while I was gluten free, but it went away recently only to come back now, like I said. They are small fluid filled bumps, but it doesn't look anything like the gross images that come up on google when you search DH. Is it possible to have a delayed reaction to gluten like this? Does anyone know if it is possible for a food allergy to be delayed like this? I also felt extremely tired for the past two days, but I attributed that to being on my period. My GI symptoms didn't get any worse or better.

I also have one last question, sorry for the super long post: Since I wasn't off gluten for long before I had essentially a month long challenge before getting tested, would my antibody levels really drop that fast if I had celiac, and if they did, wouldn't a month of eating bread be long enough to restore them? It seems like it takes many people several months to see a change. Idk what to do anymore. I'm feeling really frustrated and I still definitely think there is a connection to my symptoms and eating gluten. I have another appointment w/ my GI doctor in April so at this point I'm prepared to stay gluten-free until then and then do another gluten challenge and beg for an endoscopy despite my negative results.   

Better check to see if insurance will pay for another endoscopy so soon after the first one.  Also, why are you so hell bent on getting a diagnosis that you are willing to go through another gluten challenge?  I would not knowingly eat any gluten because the result would be hours on hours of projectile vomiting and explosive diarrhea, following days of feeling awful.  Every morsel of gluten accidentally ingested undoes the work that has gone into healing my gut.  

 Because of issues I have with sedation and anesthesia, they will only give it to me if I need a life saving operation, so the GI was not comfortable with doing an endoscopy.  I suspect he did not want to be sued.  I had positive blood tests, a positive genetic test and a positive biopsy result for dermatitis herpetiformis, so my GI was comfortable going with a diagnosis.  But, to me it made not one bit of difference.  I will never touch gluten again because the results when accidentally glutened are literally a huge mess.

As for your question about a delayed food allergy - a delayed reaction is considered a sensitivity.  A true allergy sparks a pretty immediate IgE reaction while a sensitivity can take up to a few days for the reaction.  The Elisa test for food sensitivity measures IgM reactions.  I had both tests done.  I have a true allergy to beef, yeast and casein.  The response is swift and nasty and I immediately get a GI response, and I start to cough within minutes and break out in hives.  I have an IgM reaction that is milder to  cranberries, blueberries, cod, clams, flounder, oysters, chocolate, vanilla, mushrooms, black pepper, cinnamon and black tea.  I cut them all from my diet for nearly 2 years and then tried adding them back in one at a time.  Blueberries, chocolate, cranberries, mushrooms and tea and all the seafood items still provoked a reaction 24-48 hours later, usually eczema, but weirdly also a swelling of the palms of my hands.  I found I can eat items containing small amounts of cinnamon and vanilla once in a while without a reaction.  

The other thing I have to be careful of is vaccines.  Many are grown in a bovine casein medium and many contain yeast.  I had an anaphylactic reaction to a tetanus shot.  The doctor had no idea it was grown in a bovine casein medium.  I explicity stated my allergies on the hospital forms, but he didn't know the ingredients in the vaccine so that really made no difference.  I went into shock while still in the ER on the table having my wound sutured.  I have taken to carrying around the list of adjuvants and excipients in vaccines that I printed off the CDC website so that they do not blow me off when I decline the shots they are pushing!  I got tired of getting  lectured that I was putting my health in danger by refusing them,  when the vial they had in their hand was an immediate threat to my life.  If my husband forced me to drink it, he would go to jail, but they have total immunity from liability  for shooting it into our bodies!  

 

 

[Lemons111]

41 minutes ago, DebJ14 said:

Better check to see if insurance will pay for another endoscopy so soon after the first one.  Also, why are you so hell bent on getting a diagnosis that you are willing to go through another gluten challenge?  I would not knowingly eat any gluten because the result would be hours on hours of projectile vomiting and explosive diarrhea, following days of feeling awful.  Every morsel of gluten accidentally ingested undoes the work that has gone into healing my gut.  

 Because of issues I have with sedation and anesthesia, they will only give it to me if I need a life saving operation, so the GI was not comfortable with doing an endoscopy.  I suspect he did not want to be sued.  I had positive blood tests, a positive genetic test and a positive biopsy result for dermatitis herpetiformis, so my GI was comfortable going with a diagnosis.  But, to me it made not one bit of difference.  I will never touch gluten again because the results when accidentally glutened are literally a huge mess.

As for your question about a delayed food allergy - a delayed reaction is considered a sensitivity.  A true allergy sparks a pretty immediate IgE reaction while a sensitivity can take up to a few days for the reaction.  The Elisa test for food sensitivity measures IgM reactions.  I had both tests done.  I have a true allergy to beef, yeast and casein.  The response is swift and nasty and I immediately get a GI response, and I start to cough within minutes and break out in hives.  I have an IgM reaction that is milder to  cranberries, blueberries, cod, clams, flounder, oysters, chocolate, vanilla, mushrooms, black pepper, cinnamon and black tea.  I cut them all from my diet for nearly 2 years and then tried adding them back in one at a time.  Blueberries, chocolate, cranberries, mushrooms and tea and all the seafood items still provoked a reaction 24-48 hours later, usually eczema, but weirdly also a swelling of the palms of my hands.  I found I can eat items containing small amounts of cinnamon and vanilla once in a while without a reaction.  

The other thing I have to be careful of is vaccines.  Many are grown in a bovine casein medium and many contain yeast.  I had an anaphylactic reaction to a tetanus shot.  The doctor had no idea it was grown in a bovine casein medium.  I explicity stated my allergies on the hospital forms, but he didn't know the ingredients in the vaccine so that really made no difference.  I went into shock while still in the ER on the table having my wound sutured.  I have taken to carrying around the list of adjuvants and excipients in vaccines that I printed off the CDC website so that they do not blow me off when I decline the shots they are pushing!  I got tired of getting  lectured that I was putting my health in danger by refusing them,  when the vial they had in their hand was an immediate threat to my life.  If my husband forced me to drink it, he would go to jail, but they have total immunity from liability  for shooting it into our bodies!  

 

 

Thanks for the detailed response. I actually haven't gotten an endoscopy yet (or ever), I just had the blood test come back negative but I think it could be a false negative, and I don't want to have my symptoms be dismissed as IBS or something "within the range of normal" until I'm totally positive it's not celiac. I seem to have a mild reaction to gluten compared to a lot of the experiences I've read on this forum, but I know that there's a huge range of experiences, and I'm worried about dismissing it as a sensitivity if I really have it. I will definitely look into being tested for food sensitivities and allergies.