Surprise biopsy

[Mrs. Doodlepunk]

I've assumed for the last 8 years that I have gluten intolerance, or NCGS as I see it's now called. I thought that I had testing done (blood tests) that indicated I did not have celiac disease, and proceeded to follow a gluten free diet, most of the time. I've had gluten different times for different reasons, mostly because I started thinking "This can't be true. I should be able to eat my delicious home made bread!" and I suffered the consequences. Mostly pain in my neck and upper back, burning between the shoulder blades, also bloating and cravings for sugar and junk food. Each time, it took longer to recover from having gluten in my diet. The last time was over the holiday season last Christmas. Now I'm having pretty persistent symptoms, with the addition of occasional severe epigastric pain. So, off to the doctor I went to get this severe pain checked out. I found myself having an EGD a few days later, and when I woke up from my propofol induced stupor, there was the nice gastroenterologist telling me that he'd done biopsies to check for h. pylori AND CELIAC. I was floored. He didn't know I'd been gluten free. He did find mild gastritis and reflux, and no sign of hiatal hernia, which is what I really thought I had.

I've looked through all my test results from the last 10 years, and can find nothing about testing for gliadin antibodies, or any of the tests mentioned here for gluten issues. I did have allergy testing done that was negative for wheat but I know that's not the same thing.

I'm assuming that my biopsy will be normal, but that would be meaningless because I've been mostly gluten-free. The only times I've had gluten since January is maybe five times when I've had a couple of croutons on my salad at Olive Garden, or had an egg roll or wonton soup.

If it's positive, then I know I've not been as vigilant about eliminating gluten as I should be, and I will have to stop using my wooden spoons (that my Daddy made) and my wood cutting boards (that my Daddy made) and throw away my favorite plastic spatula. My wooden cooking things were in use long ago, when I was still cooking wheat pasta, etc. So I know they are contaminated. My husband is telling me that there can't be enough gluten in those utensils to make a difference, but I've always worried about it a little bit. My Daddy can't make me any more things to replace the ones I have...

I think right now that maybe the best thing for me would be to actually have a formal diagnosis, because that would make it easier for me to stick to the gluten free business. Right now it's too easy to let it slide, and to let people convince me that it's OK "just this one time". But - I'm wondering if there are any drawbacks that I am not aware of, and if anyone here knows please tell me what they are!

If the biopsy is negative, then is there another test that can be done to make sure I really don't have celiac? I really need to be sure because I have two children. One of them has anti thyroid antibodies (I have Hashimoto's thyroiditis) and that son also has alopecia areata and psoriasis. He is gluten free along with me.

 

[ravenwoodglass]

If you want testing for celiac you will have to go back on gluten for 2 to 3 months for the blood test. There is a chance that your biopsy will be positive but if not then a challenge is in order. It would be a good idea to have your son tested also to keep him safe in school etc. He would need to do a challenge also if his ped agrees to test.

It sounds like the wooden items your father made have great sentimental value. Perhaps you could clean them very well and then give them a sanding. That might make them safe for use.

 

[GF-Cheetah Cub]

"If the biopsy is negative, then is there another test that can be done to make sure I really don't have celiac? "

Yes, we can do a genetic testing for the celiac gene, I think it is the DQ2 and DQ8 gene, and maybe one other.   If you don't have one of these genes, I was told that you can not have Celiac.  

See if your insurance will pay for one of this test.   If not, I think you can pay out of pocket for about $300.

[squirmingitch]

1 hour ago, gluten-free-Cheetah Cub said:

"If the biopsy is negative, then is there another test that can be done to make sure I really don't have celiac? "

Yes, we can do a genetic testing for the celiac gene, I think it is the DQ2 and DQ8 gene, and maybe one other.   If you don't have one of these genes, I was told that you can not have Celiac.  

See if your insurance will pay for one of this test.   If not, I think you can pay out of pocket for about $300.

This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven? 

My point is, that getting the gene testing is not an absolute determination either way.

[squirmingitch]

Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs.

From:

Open Original Shared Link

 

[Mrs. Doodlepunk]

I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it.

I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is.

Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!

[squirmingitch]

It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.

 

Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs:

"If a dog will not come to you after having looked you in the face, you should go home & examine your conscience." 

~~~ Woodrow Wilson ~~~

[ravenwoodglass]

7 hours ago, squirmingitch said:

This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven? 

My point is, that getting the gene testing is not an absolute determination either way.

Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease.

PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.

[Ennis-TX]

3 hours ago, ravenwoodglass said:

Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease.

PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.

While celiac is primarily a genetic disease, there are cases of it appearing in people that have NO genetic history of it, nor the genes for it and it develops as a complete mutation caused by a trigger normally associated with some kind of shock or trauma to the immune system. There the same theory that that applies to bringing out the dormant gene for the disease applies that when the body and immune system is under shock or stress, and consuming gluten the body is easily confused and slips up identifying the gluten proteins as harmful and developing antibodies for them (more so common if you have another AI issue and the body is already under stress).....and like a kind of messed up vaccine you from then on pretty much have it....NOTE this is based off a article I read a while back and I can not quote sources or confirm my wording. PLEASE if anyone can correct this if I am wrong or messed up on my memory. 

[Mrs. Doodlepunk]

This is all so interesting. Thank you all for responding, you've helped me.

[Jmg]

Hello

18 hours ago, Mrs. Doodlepunk said:

I think right now that maybe the best thing for me would be to actually have a formal diagnosis, because that would make it easier for me to stick to the gluten free business. Right now it's too easy to let it slide, and to let people convince me that it's OK "just this one time". But - I'm wondering if there are any drawbacks that I am not aware of, and if anyone here knows please tell me what they are!

One drawback is that there are no guarantees. You may go through the testing process and not get the answer you want or need. I did go through testing after having been gluten free and was stunned when I was told it was negative. By that point I'd gone through the challenge and seen various symptoms return so I thought I'd definitely be diagnosed celiac.

The consultant advised me to go gluten free anyway and because I'd good evidence to support that I've not had any problems staying on the diet since then. So it can be done, it just requires a certain mind set, essentially I live my life as if the diagnosis was positive. No exceptions.  

12 hours ago, Mrs. Doodlepunk said:

I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it.

 

I think  this is where people make a mistake, if it's 'just' gluten sensitivity' then they can make exceptions on special occasions etc. I think that makes it harder to live gluten free because you still have to make choices and judgments about whether to eat gluten or not. For me, it's never an option so I don't have the conversation. Everyone around me understands that as well.

Quote

I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess.

Only you can decide on this. I don't regret doing it because I learned more about my bodies reactions but I found the challenge unpleasant as my reaction to gluten had become more extreme after removing it from my diet. You won't gain much for yourself, the answer is still the same and you already have enough info to know you should never eat gluten again, but your kids may gain if your positive diagnosis keeps them monitored in later life. 

Best of luck!

 

[ravenwoodglass]

6 hours ago, Ennis_TX said:

While celiac is primarily a genetic disease, there are cases of it appearing in people that have NO genetic history of it, nor the genes for it and it develops as a complete mutation caused by a trigger normally associated with some kind of shock or trauma to the immune system. There the same theory that that applies to bringing out the dormant gene for the disease applies that when the body and immune system is under shock or stress, and consuming gluten the body is easily confused and slips up identifying the gluten proteins as harmful and developing antibodies for them (more so common if you have another AI issue and the body is already under stress).....and like a kind of messed up vaccine you from then on pretty much have it....NOTE this is based off a article I read a while back and I can not quote sources or confirm my wording. PLEASE if anyone can correct this if I am wrong or messed up on my memory. 

I agree that In people that have celiac there usually is a trigger. It can be physical or emotional stress as the article states. I wonder though if the people they say 'don't have the genes' are folks that simply have rarer ones. There is research on more genes. I discovered it when I was writing a paper for a class. It was a very long time ago in 'computer age' and my bookmarks died along with the computer I was useing. But it is out there on peer reviewed sites like Lancet, NIH etc.

Since celiac was rarely tested for even a couple decades ago there are many folks that may have celiac in their family but it was never known. That was the case in my family. I am confident about that.  I always wondered why my Mom seldom left the house, spent a lot of time in the bathroom, was tired all the time and was always holding her hands the way she did.  Then I became her. 

We have so much to learn about celiac. Personally I dislike the term 'NCGS' because it makes folks think at times they don't need to be as strict and it isn't as serious. Too many are told that their biopsies are negative and they then get the NCGS label if they had positive bloods.  I consider celiac to be a spectrum disorder. Not all celiacs have gut impact or at least haven't developed it yet. I had the neuro impact and DH from shortly after I was impaled as a young child. It was many years before any severe GI issues arose.

 

[Mrs. Doodlepunk]

Welp, according to the lady at the gastro's office, my tests were all "fine" and I don't have cancer or celiac. I asked for a copy of the report so hopefully that will happen.

I guess I will follow up with my family practice doctor and see what they think I should do next, but I am not going to go back on gluten again. My eye doctor is concerned about an inflammatory condition in my retinas, that is rapidly advancing over the last year and thinks that anything I can do to decrease inflammation should be done. So to me, that means sticking with gluten free and lots of vegetables, especially the leafy greens.

Also need to figure out why my liver enzymes are elevated. This is the third time in the last 9 years according to my old labs.

I've gone over all my supplements and my one medication (compounded thyroid) to make sure they are all gluten-free. My plan is to live like I have celiac disease from here on out. My only dilemma is what to give people as a reason why I can't eat the food they make for me. For now, "Gluten makes me deathly ill" is going to have to be good enough.

thank you all for the help and advice! I've found a wealth of information here and am currently reading Dr. Fassano's book and a couple of different threads on this forum that are incredibly helpful.

[Jmg]

2 hours ago, Mrs. Doodlepunk said:

My only dilemma is what to give people as a reason why I can't eat the food they make for me. For now, "Gluten makes me deathly ill" is going to have to be good enough.

You have a few options.

If your in a restaurant or cafe and want a safe meal, just declare yourself celiac or alternatively say 'no gluten please, it's a medical requirement' if you're uncomfortable doing this. The objective is for them to treat your being gluten free seriously and distinguish yourself from hipster part time fad dieters. 

With friends you can develop a shorthand answer:

'I worked out myself I had a problem with gluten and now sadly the tests won't work. I know I either have celiac or non celiac gluten sensitivity, either way I have to be gluten free for life from here on out. No exceptions, its just not worth it'

and stick to that line till they're bored senseless by it and stop asking.  Consistency is the key to this and will help you immensely, whilst people think you can be persuaded they'll try to do so and you'll constantly find your willpower being tested. Once they realise that it's just not an option for you they'll stop and that will make it easier for you.

Read up on NCGS here if you're interested: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/

 

Best of luck

 

 

 

[Mrs. Doodlepunk]

18 minutes ago, Jmg said:

Read up on NCGS here if you're interested: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/

 

Best of luck

 

 

 

Thank you! That was the thread I already found and am reading my way through.

[lfortson]

On 7/22/2017 at 7:02 PM, gluten-free-Cheetah Cub said:

"If the biopsy is negative, then is there another test that can be done to make sure I really don't have celiac? "

Yes, we can do a genetic testing for the celiac gene, I think it is the DQ2 and DQ8 gene, and maybe one other.   If you don't have one of these genes, I was told that you can not have Celiac.  

See if your insurance will pay for one of this test.   If not, I think you can pay out of pocket for about $300.

 

[lfortson]

Following a gallbladder surgery, I could not get my digestive system back to normal.  After several months of constant diarrhea, I went to see the gastro dr. and told her my problems. I also mentioned that I had a sister, brother and nephew with Celiacs.  She said, "I'm almost sure that's the problem".  I, like you, did not want to go back to eating gluten so I did the gene test but it was not positive.  I learned it is not always an exact test.  It came back with Crohns which so far I have no symptoms.  The Endoscopy  indicated Hpylori, CDiff, and one other bacteria.  After I took all the meds to clear my body of these bacterias, I was still having  some symptons of diarrhea and found that I thought I was clear of all gluten but I had a long way to go. Throwing away a wooden cutting board my dad had given me, lipstick, lipgloss, makeup, handcream, plastics in the kitchen, pans that had a scratch, any item in the pantry that had any of the items with starch that may have gluten and the list goes on and on.  I'm still reading labels but I definately can tell a difference as I have eliminated more items that I had no idea were harmful.  This website has been a life-saver for me.  Thank You so much for your wealth of information.   Linda Fortson  

 

[Jmg]

1 hour ago, Mrs. Doodlepunk said:

Thank you! That was the thread I already found and am reading my way through.

Hope it proves of use  The Umberto Volta interview is particularly interesting and the case study from England also...

[Mrs. Doodlepunk]

48 minutes ago, lfortson said:

 Throwing away a wooden cutting board my dad had given me, lipstick, lipgloss, makeup, handcream, plastics in the kitchen, pans that had a scratch, any item in the pantry that had any of the items with starch that may have gluten and the list goes on and on.  I'm still reading labels but I definately can tell a difference as I have eliminated more items that I had no idea were harmful.  This website has been a life-saver for me.  Thank You so much for your wealth of information.   Linda Fortson  

 

I am considering having my brother - who inherited Daddy's power woodworking tools - plane down my cutting boards and sand the edges enough so I can keep them. The spoons and soup stirring things though will have to be decorative. Breaks my heart.

I've had good luck with Merle Norman cosmetics. They have a listing of things that are gluten-free that has helped me. My local store owner was able to get the list and knows what I can use and what I can't.

[lfortson]

Yes,  Merle Norman is what I use also.  

 

[Noobette]

I am in a very similar situation. I tested positive for two of the celiac genes (2.5 & 8, IIRC), and stopped eating gluten proactively even though I wasn't having symptoms (that I recognized, anyway). However, I didn't separate stuff in my kitchen or worry about cross-contamination. I got sick a while later and eventually had an endoscopy which showed Marsh 1 - inconclusive results after being gluten-free for a year. I got strict and replaced all the wood and plastic stuff in my kitchen, and my symptoms went away. I've since struggled with whether to do the gluten challenge and find out for sure how careful I need to be, but so far I've decided it's not worth the risk. I end up telling most people I have celiac, just because it's easier than going into a long and tedious explanation.