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Waiting on endoscopy


OpenlyCanadian

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OpenlyCanadian Rookie

So after a year of severe illness I finally was able to see a gastroenterologist. I have been living in the states for many years and haven’t had medical insurance (that’s a whole other story) but long story short I do now and finally finally finally someone is going to look at my guts.

 

I’ve lost about 50lbs and am having trouble maintaining my current weight. I have bloating, joint pain, headaches, skin rashes, mouth sores, fragile teeth, diarrhea, gi bleeds and after a long bout with severe severe gastrointestinal distress a prolapsed rectum. It’s been a wild ride. Eventually my diet just became extremely restricted and I cut out gluten because it seemed to be one of many offenders along with meat, dairy, eggs and some other things. The gi suspects celiacs, chrons or ulcerative colitis. 
 

recent bloodwork however has not revealed any hallmark signs such as anemia or malnutrition. Only low blood pressure and almost abnormal thyroid levels. The celiac blood test said negative... I asked the doctor if it could be inaccurate if I hadn’t been eating gluten and she rolled her eyes at me and said “yes, if you haven’t eaten gluten it won’t be accurate”. 

 

I find some of it quite shockingly normal given my current state. However, I do remember seeing my fathers blood work leading up to his slow slow starvation death from bowel cancer and it always looked remarkably normal until about a week before he actually died. So I don’t know how reliable I feel bloodwork is... any thoughts on that? 
 

although my appointment has not been scheduled as of this moment, the endoscopy biopsy and colonoscopy has been ordered. I am being proactive and just started eating gluten as of tonight. Normally I am asleep right now but I feel absolutely terrible, hot, sweaty, bloated, crampy, itchy, irritated and restless.
 

Am I doing this right? Is there anything else I should be doing? 
 


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trents Grand Master

If you intend to go through with the endoscopy/biopsy you are doing it right. The only question I have is why you are starting there instead of the blood test which would be less invasive and less expensive since you don't have insurance? The first time it was invalidated because your were off gluten. It is true, however, that it takes about 8 weeks of consuming gluten daily to render a valid blood antibody test whereas only about 2 weeks for the endoscopy/biopsy. So from that perspective, you would be torturing yourself for a shorter period of time if you go for the endoscopy biopsy, assuming of course, you can get that scheduled fairly quickly.

OpenlyCanadian Rookie

 I had the blood test and it was negative. I’d been off gluten for two months prior and the doctor failed to tell me that I was supposed to be eating gluten so the test was inconclusive. I do have full coverage insurance now. Because of the severity of my symptoms and a family history of digestive cancer they HAVE to do an endoscopy and colonoscopy to look for other things. 

trents Grand Master

Okay, then. Seems like you are on the right track and there is nothing else to do except wait for the procedure to be scheduled. Make sure you are eating the equivalent of 1-2 slices of wheat bread daily leading up to the procedure.

OpenlyCanadian Rookie

Is there anything I can do to combat the awful symptoms that follow or do I just sort of have to weather the storm here?

trents Grand Master

When you go off of gluten, do you feel much better? I'm just wondering why you need testing confirmation if in fact your symptoms abate when you go off of gluten.

OpenlyCanadian Rookie

After going off gluten, a lot of my symptoms subsided but didn’t completely resolve. This test is part of a massive work up to figure out what exactly is wrong with me. After the death of my father many other family members started talking about their digestive health issues, my brother seems to be ill with almost identical issues. We are all seeking answers at this time. Due to the symptoms the doctors are doing this test without me even asking for it. Just for a very long time I have been highly suspicious that it is in fact celiacs disease and that it runs in my family. It would be useful to find out if this is true not only for me but for other family members looking for answers. 


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trents Grand Master

In that case, you and your family members should look at getting genetic testing done to look for the celiac gene markers. Although it is true that a high percentage of the population will have some of the gene markers and therefore some potential for celiac disease, it might be helpful  for you and your loved ones to know if you have a very strong propensity for celiac disease in the genes.

OpenlyCanadian Rookie

For whatever reason, my doctors seem to be very resistant to any sort of genetic testing because I’d also like to be tested for lupus markers which we do know does run in our family. I am not sure why this is, that they are resistant. So I am just going through the motions. 

trents Grand Master

https://www.verywellhealth.com/celiac-disease-genetic-testing-562695

"There are two places you can have the testing done without a doctor's order: Enterolab, a specialized laboratory in Dallas (Enterolab also performs gluten sensitivity testing), and the genetic testing service 23andMe.com.

For around $150 (paid at the time you place the order), Enterolab will analyze your genes and tell you which HLA-DQ genes you carry, including whether you carry one of the two main celiac disease genes. The test is performed with cells collected with a swab on the inside of your cheek, so there's no blood draw involved. Once you swab your cheek and ship off your sample, the results are emailed to you within about three weeks. 

With 23andMe.com, meanwhile, you'll spit into a vial and send the vial off to be tested. The company provides celiac disease gene testing through its "Health and Ancestry" option, which costs around $200. Your report also will provide detailed information on your ancestry, and data on genetic relatives."

Scott Adams Grand Master

I think that all of your brothers and sisters, especially those who have bad gastro symptoms as you've described, should get a blood test for celiac disease. If anyone of them have it, you have an ~44% chance of also having it. In my opinion anyone with unexplained, long-term gastro symptoms should be screened for celiac disease. I can't find the study now, but I do recall a study about 12-15 years back that indicated that although only 1% of people have celiac disease, that up to ~15-20% of those visiting a gastro doctor will have it.

Although it won't be easy, you may also want to consider continuing eating gluten for an additional 6 weeks after your biopsy to get a blood panel done for celiac disease. Biopsy results, especially after going gluten-free for a while and only eating gluten for a couple of weeks beforehand, could be inconclusive.

Here is more info on the gluten challenge:

 

trents Grand Master
(edited)

https://www.verywellhealth.com/celiac-disease-genetic-testing-562695

"There are two places you can have the testing done without a doctor's order: Enterolab, a specialized laboratory in Dallas (Enterolab also performs gluten sensitivity testing), and the genetic testing service 23andMe.com.

For around $150 (paid at the time you place the order), Enterolab will analyze your genes and tell you which HLA-DQ genes you carry, including whether you carry one of the two main celiac disease genes. The test is performed with cells collected with a swab on the inside of your cheek, so there's no blood draw involved. Once you swab your cheek and ship off your sample, the results are emailed to you within about three weeks. 

With 23andMe.com, meanwhile, you'll spit into a vial and send the vial off to be tested. The company provides celiac disease gene testing through its "Health and Ancestry" option, which costs around $200. Your report also will provide detailed information on your ancestry, and data on genetic relatives."

 

Edit: There are also home blood antibody tests available for around $100 I think.

Edited by trents
OpenlyCanadian Rookie

I am so glad I decided to post here after lurking for so long, my family and I are all so new to this information especially the information around testing and types of testing. Our doctors have been generally unhelpful regarding the possibility of celiacs and generally in disbelief until my current GI. This is why I’ve started eating gluten before even being scheduled because I just want the possibility of conclusive results to be as high as possible. Thank you guys for this information on the genetic testing and gluten challenges I honestly wasn’t even aware the genetic testing was privately available because no one has told me. Basically all I do know is that the symptoms seems to fit in our family. We are really learning at this time how to properly advocate for our own healthcare and we are fighting for treatment which is something I truly believe could’ve saved my father if he knew he would’ve had to fight for answers. 
 

I will be ordering a genetic test kit and I will be reading up on all of this. Thank you so much. 

CMCM Rising Star
9 hours ago, OpenlyCanadian said:

After going off gluten, a lot of my symptoms subsided but didn’t completely resolve. This test is part of a massive work up to figure out what exactly is wrong with me. After the death of my father many other family members started talking about their digestive health issues, my brother seems to be ill with almost identical issues. We are all seeking answers at this time. Due to the symptoms the doctors are doing this test without me even asking for it. Just for a very long time I have been highly suspicious that it is in fact celiacs disease and that it runs in my family. It would be useful to find out if this is true not only for me but for other family members looking for answers. 

I'm beginning to think if you find one family member with celiac, you'll find many more if you go looking for it.  My mother was first, terribly sick before her diagnosis in 1967, which given the lack of knowledge at that time, was a miracle that she was diagnosed before she died of malnutrition.  Many years later in 2006, I got a gene test done and found I had the DQ2 gene.  So we tested my mother and found she had TWO DQ2 genes.  Which means my grandmother also had one, and although she suffered from arthritis, she lived until 99!  Since my mother had double genes, we know that all four of her children got one.  My brother's son got double DQ2 genes as well, so we know he had one from my mother.  My sister got my mother's DQ2 and a second gene from my father that was not celiac but said to be almost the same as the DQ2-0201.  My brother's daughter got one.  My own daughter and son each have one from me.  My brothers claim to have no symptoms (because they expected to have our mother's degree of symptoms if they had it), although they obviously have the DQ2 gene.  And on it goes.  I suspect my husband's late father had celiac....Irish, he had schizophrenia which oddly seemed to disappear when he was sick towards the end of his life and wasn't eating gluten.  I suspect my late mother in law had celiac as well because she had a lot of suspicious symptoms including psoriasis.  On and on it goes, everywhere you look.  Yep, it's in families for sure.

trents Grand Master

Interesting discussion. I have an uncle that was diagnosed with celiac disease 10-12 years ago. For a short while he made some effort to eliminate gluten from his diet but then abandoned all pretense of it. I rode his case for a while about that but then came to realize he had made a decision to just live with it rather than have "gluten free" interfere with his life. He's a very social person and dines out frequently. He lives on the east coast and me on the west coast so I don't have have face to face interaction with him but from what I can tell, his symptoms, if he had any were relatively minor. I think his celiac disease dx was triggered by some lab values that were out of whack. He's 90 years old now.

It seems like many of our forum contributors attest to having celiac disease in their heritage but many of their relatives who had it lived to rip old ages but lived with some health issues that could be tied to celiac disease.

We also have many forum contributors who felt much better for some years after going gluten from following their celiac disease dx but more recently have had a return of many of the same symptoms they suffered before dx.

Where I'm headed with this is sometimes I wonder if we're doing ourselves more harm than good by focusing so much on eliminating gluten from our diets and if it's really doing us much good. And the answer may not be the same for everyone, depending on the severity of symptoms associated with continuing to consume gluten. 

Please don't misunderstand what I'm saying here. I'm not advocating that we should ignore the dx of celiac disease and start eating gluten again. I'm just musing here and I wonder if others have had these same thoughts.

Scott Adams Grand Master

My brother and I have DQ2 and DQ8 markers for celiac disease, and inherited one from each parent. My mother was diagnosed after I was, but my father passed away at 48 of a heart attack, and had Type I diabetes (smoking two packs a day didn't help either), but I'm sure had never heard of CD or was ever tested for it. It definitely affects many in my extended family, although some won't go gluten-free. 

CMCM Rising Star
15 hours ago, trents said:

Interesting discussion. I have an uncle that was diagnosed with celiac disease 10-12 years ago. For a short while he made some effort to eliminate gluten from his diet but then abandoned all pretense of it. I rode his case for a while about that but then came to realize he had made a decision to just live with it rather than have "gluten free" interfere with his life. He's a very social person and dines out frequently. He lives on the east coast and me on the west coast so I don't have have face to face interaction with him but from what I can tell, his symptoms, if he had any were relatively minor. I think his celiac disease dx was triggered by some lab values that were out of whack. He's 90 years old now.

It seems like many of our forum contributors attest to having celiac disease in their heritage but many of their relatives who had it lived to rip old ages but lived with some health issues that could be tied to celiac disease.

We also have many forum contributors who felt much better for some years after going gluten from following their celiac disease dx but more recently have had a return of many of the same symptoms they suffered before dx.

Where I'm headed with this is sometimes I wonder if we're doing ourselves more harm than good by focusing so much on eliminating gluten from our diets and if it's really doing us much good. And the answer may not be the same for everyone, depending on the severity of symptoms associated with continuing to consume gluten. 

Please don't misunderstand what I'm saying here. I'm not advocating that we should ignore the dx of celiac disease and start eating gluten again. I'm just musing here and I wonder if others have had these same thoughts.

What you said about too much focusing on gluten is what I've thought about a LOT.  I grew up with a celiac mother and keeping her gluten free was a big issue in my family.  My mother hated it, I did too.  Certainly it affected how I ate for some of my  teen years.  Since I didn't have her severe digestive manifestation, I thought lucky me, I'd escaped it.  Over the years I had health issues that from what I read now, seem to have a strongly possible connection to gluten.  I'd say that for most of my adult life, I've somewhat minimized gluten perhaps, but I still ate it although the advisability of this was usually in the back of my mind.  I researched for myself in 2006 after a health crisis that was identical to what occurred just 2 months ago,  and took the possibility seriously for awhile, then drifted out of it while thinking I wasn't being affected much if at all.  I still saw the most problems with dairy, which I ate but minimized as well.  I got a couple of celiac blood tests (one in 2015, a second a few years prior to that, both negative).  So I figured I didn't have the problem!  

With my own sudden bad reaction (duplicate of the one from 14 years ago) in late December, I've had to rethink things again, and I've certainly learned  more about celiac and NCGS.  Without a positive blood result, it's still hard to know what to do.  As a result of what I've learned, I've committed to staying gluten free and mostly dairy free for a full year and see how all sorts of things go.....especially the neuropathy, the joint pain, the sky high cholesterol, blood pressure (I'd like to get off my mild bp med entirely).  I figure a year of this will give me a good idea how to proceed.  The most important thing I've learned is that a blood test might not reveal celiac disease, a biopsy can miss it, and NCGS can be just as serious and damaging (in other ways) as celiac so I should take that just as seriously as a celiac diagnosis.  I recently read that if you have the DQ2 or 8 gene, you can have a worse set of issues (or equally so) as celiac.  So it's not to be lightly dismissed.

Meanwhile, as I read all the newer information out there (I last studied all this in 2006 with info from that time frame and a bit prior to it), I now see things to be suspicious about in my family.  I know my father's two genes through the gene tests my sister and I got (brothers refused) and we each got my mother's DQ2-0201 gene, and two different ones from our father), which were characterized by Enterolab as "gluten sensitive" related.  I don't know if that's actual science or not to identify any genes as gluten sensitivity related (???), I've had the impression that there is no test to indicate gluten sensitivity beyond the known celiac genes.  But my father got overweight, had sinus issues, perhaps digestive issues of some sort, and he got cancer and died at 73.  My two brothers BOTH had prostate cancer at 53.  They had treatment and are doing fine 15 an 20 years later.  But one brother suffered terribly from migraines, and has always had what I believe to be a mild form of autism.  Both brothers deny any "celiac" symptoms, but they use my mother's severe symptoms as a benchmark.  My grandmother (who obviously donated one celiac gene to my mother) had terrible arthritis the last 15 to 20 years of her life but nothing else I know of, but mentally was sharp as a tack until she died at 99 so nothing cognitive happened to her.  My mother was strictly gluten-free from age 46 until she died at 95, and she was also mentally fine until the end.  

So there's a lot to think about.  I really don't want to have to be serious about eating gluten, but I've somewhat ignored the possibility for most of my 71 years and I have to say my recent experience and reading on the subject has left me a bit apprehensive and hoping I haven't caused any irreversible damage at this point.

I'm currently reading Jaqui Karr's "Your Brain on Gluten" which is a VERY interesting read for sure.

CMCM Rising Star
3 hours ago, Scott Adams said:

My brother and I have DQ2 and DQ8 markers for celiac disease, and inherited one from each parent. My mother was diagnosed after I was, but my father passed away at 48 of a heart attach, and had Type I diabetes (smoking two packs a day didn't help either), but I'm sure had never heard of celiac disease or was ever tested for it. It definitely affects many in my extended family, although some won't go gluten-free. 

When my mother was fairly close to death at age 46 (1967) due to malabsorption (her endoscopy revealed an almost complete lack of villi, her intestines looked like a billiard ball she said), virtually no doctors knew a thing, although one of them asked if she had been in the tropics or Africa...thinking tropical sprue.  In fact, a whole series of doctors told her it was all in her head.  It was true fate that she finally encountered a doctor who tested her properly and figured out her problem.  Bad off as she was, a repeat endoscopy after nearly a year gluten free revealed her villi had regenerated. She regained her health and weight fairly quickly.  It's worth noting that this diagnosis gave her 49 more years of life that she wouldn't have had.  She weighed something like 85 or so lbs at diagnosis and was on her way out very quickly at 46.

Most members of my family don't feel the need to go gluten free.  That includes my two brothers (who both have the DQ2 gene), my niece, a few others.  My sister takes it very seriously and has avoided gluten since I convinced her to get tested back in 2006 when I first explored this).  My nephew has both DQ2 genes and gets violently sick, so he avoids gluten.  My son has a DQ2 and a supposed GS gene, and he gets violently sick from even cross contamination, so he avoids it scrupulously.

On my husband's side, I really do have to wonder about my Irish father in law, who supposedly had schizophrenia  (died of cancer at 73, was a smoker).  My mother-in-law had psoriasis and migraines and a few other issues, but she lived until 95 and the the last several years of her life she DID have a mild dementia.  And my husband's sister I also suspect might have something going on with gluten as well.  

But ultimately, NO ONE wants to know or hear about this unless forced into it by their own health and perhaps the good fortune of being able to get properly diagnosed.  I learned to keep my mouth pretty much closed  about it all and say very little unless asked.

 

trents Grand Master
(edited)
18 minutes ago, CMCM said:

What you said about too much focusing on gluten is what I've thought about a LOT.  I grew up with a celiac mother and keeping her gluten free was a big issue in my family.  My mother hated it, I did too.  Certainly it affected how I ate for some of my  teen years.  Since I didn't have her severe digestive manifestation, I thought lucky me, I'd escaped it.  Over the years I had health issues that from what I read now, seem to have a strongly possible connection to gluten.  I'd say that for most of my adult life, I've somewhat minimized gluten perhaps, but I still ate it although the advisability of this was usually in the back of my mind.  I researched for myself in 2006 after a health crisis that was identical to what occurred just 2 months ago,  and took the possibility seriously for awhile, then drifted out of it while thinking I wasn't being affected much if at all.  I still saw the most problems with dairy, which I ate but minimized as well.  I got a couple of celiac blood tests (one in 2015, a second a few years prior to that, both negative).  So I figured I didn't have the problem!  

With my own sudden bad reaction (duplicate of the one from 14 years ago) in late December, I've had to rethink things again, and I've certainly learned  more about celiac and NCGS.  Without a positive blood result, it's still hard to know what to do.  As a result of what I've learned, I've committed to staying gluten free and mostly dairy free for a full year and see how all sorts of things go.....especially the neuropathy, the joint pain, the sky high cholesterol, blood pressure (I'd like to get off my mild bp med entirely).  I figure a year of this will give me a good idea how to proceed.  The most important thing I've learned is that a blood test might not reveal celiac disease, a biopsy can miss it, and NCGS can be just as serious and damaging (in other ways) as celiac so I should take that just as seriously as a celiac diagnosis.  I recently read that if you have the DQ2 or 8 gene, you can have a worse set of issues (or equally so) as celiac.  So it's not to be lightly dismissed.

Meanwhile, as I read all the newer information out there (I last studied all this in 2006 with info from that time frame and a bit prior to it), I now see things to be suspicious about in my family.  I know my father's two genes through the gene tests my sister and I got (brothers refused) and we each got my mother's DQ2-0201 gene, and two different ones from our father), which were characterized by Enterolab as "gluten sensitive" related.  I don't know if that's actual science or not to identify any genes as gluten sensitivity related (???), I've had the impression that there is no test to indicate gluten sensitivity beyond the known celiac genes.  But my father got overweight, had sinus issues, perhaps digestive issues of some sort, and he got cancer and died at 73.  My two brothers BOTH had prostate cancer at 53.  They had treatment and are doing fine 15 an 20 years later.  But one brother suffered terribly from migraines, and has always had what I believe to be a mild form of autism.  Both brothers deny any "celiac" symptoms, but they use my mother's severe symptoms as a benchmark.  My grandmother (who obviously donated one celiac gene to my mother) had terrible arthritis the last 15 to 20 years of her life but nothing else I know of, but mentally was sharp as a tack until she died at 99 so nothing cognitive happened to her.  My mother was strictly gluten-free from age 46 until she died at 95, and she was also mentally fine until the end.  

So there's a lot to think about.  I really don't want to have to be serious about eating gluten, but I've somewhat ignored the possibility for most of my 71 years and I have to say my recent experience and reading on the subject has left me a bit apprehensive and hoping I haven't caused any irreversible damage at this point.

I'm currently reading Jaqui Karr's "Your Brain on Gluten" which is a VERY interesting read for sure.

Thank you. A very thoughtful reply. I expected most replies to what I posted to be critical.

Edited by trents
OpenlyCanadian Rookie

AN UPDATE TO MY GLUTEN CHALLENGE:

I will be discontinuing the challenge as of this morning as I do not feel it is medically safe to continue. I have notified my GI they may not be able to test for celiac in biopsy. 
 

I guess I could always order the gene test just to see but whether or not it’s celiacs disease I’m not sure if it matters because I won’t be able to eat wheat at all ever again. If it’s not there must be a severe food allergy to wheat because after a few days symptoms are as follows:

 

swelling of the face and eyes

head to toe rashes and hives including palms and soles of feet

difficulty breathing

difficulty swallowing

uncontrollable belching

involuntary food regurgitation 

the worse acid reflux of my life so bad it’s making me lose my voice

diarrhea

bloating

mouth sores and mouth itching

chest pain, probably from reflux

joint pain and body aches

inability to sleep from severe itching

 

now while I’m no stranger to allergies and itching because I’ve had eczema, asthma, and general allergies my whole life I am still not sure why this reaction is so extreme. Maybe from abstaining for so long from an allergen? It’s pretty bizarre. I was sort of determined to get through it but after waking up this morning after 2 hours of sleep looking like a lumpy lobster my family has pleaded with me to cease and desist my experiment and I wholeheartedly agreed.

I will still be proceeding with the endoscopy and colonoscopy to check to make sure there is nothing else going on in tandem. But I may just have to accept the fact that I will have to stick to a severely restricted diet for the rest of my life and maybe also see an allergist. 

 

Scott Adams Grand Master

To me it sounds like you have a wheat allergy in addition to a possible gluten sensitivity. In many cases I do think the gluten challenge is done too often, and many of the people who post on this forum have already figured out that they have a sensitivity to gluten, so they don’t really need to go on a challenge to get the medical diagnosis. Around 12% of people have gluten sensitivity, while around only 1% have celiac disease. Either way both groups need to be on a gluten-free diet for life. And then there is the entire different category of the weed allergy group. Unfortunately there is no test yet for the gluten sensitivity group.

trents Grand Master

OpenlyCanadian, I agree with your decision. Enough is enough! I also agree with Scott in that your symptoms seem to go beyond either celiac disease or gluten sensitivity. Some of your symptoms are classic allergy symptoms. It may be to gluten but it wouldn't surprise me if there is also an allergic reaction to something else in your diet or your environment. I'm not a doctor and can't prescribe medications but I would be tempted to try some potent antihistamine to get this under control and maybe even prednisone. Your immune system is in full rebellion.

OpenlyCanadian Rookie

Yes! Definitely an allergy. The only thing I have changed in the past couple days environmentally and dietary is the addition of wheat bread unfortunately, I am suspecting this may be some sort of adult onset severe food allergies... whether or not that could be causing all of my problems I am not sure but I will definitely be avoiding wheat. Since I have gotten sick there seem to be some specific food items causing immediate onset issues that I have been avoiding for months. Eggs and red meat seem to cause a pretty violent digestive reaction. So maybe it would be best to see an allergist at this point. I will continue with the GI tests because I do have a GI bleed and a prolapsed rectum that needs to be investigated... it does seem pretty wild that food allergies alone would cause that. So I do wonder what else if anything else is going on. 
 

I definitely downed the Benadryl today and covered myself in calamine lotion. How miserable this is. 

  • 4 weeks later...
JenniK Contributor
On 3/3/2021 at 1:02 PM, trents said:

https://www.verywellhealth.com/celiac-disease-genetic-testing-562695

"There are two places you can have the testing done without a doctor's order: Enterolab, a specialized laboratory in Dallas (Enterolab also performs gluten sensitivity testing), and the genetic testing service 23andMe.com.

For around $150 (paid at the time you place the order), Enterolab will analyze your genes and tell you which HLA-DQ genes you carry, including whether you carry one of the two main celiac disease genes. The test is performed with cells collected with a swab on the inside of your cheek, so there's no blood draw involved. Once you swab your cheek and ship off your sample, the results are emailed to you within about three weeks. 

With 23andMe.com, meanwhile, you'll spit into a vial and send the vial off to be tested. The company provides celiac disease gene testing through its "Health and Ancestry" option, which costs around $200. Your report also will provide detailed information on your ancestry, and data on genetic relatives."

I would like to have the genetic testing done too. When i looked at Enterolab, the only options i see are stool testing. I don’t see anything anywhere about cheek swab.  If it is there, would you let me know?

trents Grand Master

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      If I'm not mistaken, you need to count by the grams of GLUTEN, not the gram weight of the bread.  So, instead of counting each slice of bread as 35 grams, it would be counted as 2 grams, so that's why the recommendation is 5 slices a day = 10 grams.  One of the moderators can correct me if I'm wrong on that!  
    • JA917
      Question re: life/health insurance: if you're already under these policies, do you have to notify them if you receive an official diagnosis, or is that only for new policies?  I have had two active term life insurance policies for many years that I pay a set amount into.  And my employer covers my health insurance.  So, do I need to let them both know if I do become officially diagnosed?  I'm glad I read this, because that would certainly be marked off in the "disadvantage" box for me!
    • JA917
      I'm new here so I'm not sure if I'm allowed to recommend doctors?  But I am in Manhattan and see Dr. Lauren Schwartz at Manhattan Gastroenterology.  I am still in the process of (potentially) being diagnosed and she has been wonderful.  She has experience in Celiac and has a very calming bedside manner.  I feel confident I'll get the right diagnosis with her.  Give her a try if she takes your insurance.  Good luck!
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