Questions from recent diagnosed celiac

[Kirstie 1]

After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.

I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to!

After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.

Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?

I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover I really don't want to suffer like that for 6 weeks!

Thanks

K x

[ravenwoodglass 1,346]

Since you are seeing good results on the diet and the chance of a false negative on testing is pretty high personally I would just keep doing what you are doing.

[StephanieL 74]

Sounds like you are in Australia, yes?

If so isn't there something like a tax write off or government help affording foods if you are formally dx? Doing it or not is up to you. If it would be worth it for $ reason, it may be worth it for a formal dx.

[Kirstie 1]

Sounds like you are in Australia, yes?

If so isn't there something like a tax write off or government help affording foods if you are formally dx? Doing it or not is up to you. If it would be worth it for $ reason, it may be worth it for a formal dx.

I am in England but we also get money off here, so yes that is an incentive!

[Kirstie 1]

Since you are seeing good results on the diet and the chance of a false negative on testing is pretty high personally I would just keep doing what you are doing.

How likely is getting a negative test result? Do you know why this happens?

Thanks

[MitziG 95]

Well, you may be non-celiac gluten intolerant. It is much more commmon than celiacs, and the reaction can be just as severe. Such is the case with most people on this board. Gluten intolerance does not show up on a test, and unfortunately, is disregarded by most doctors.

Celiac testing has a false negative rrate of about 30%- so your chaces are sketchy of getting a positive, even if you survived the lengthy "gluten challenge" which seems unlikely, given the severity of your reaction.

I wonder if there is a possibility of doin an in-office gluten challenge? If you react quickly and negatively (passing out) perhaps a doctor could observe this firsthand and would be willing to dx based on your severe reaction.

[dani nero 50]

It all depends on how much you need to be formally diagnosed VS. how much you don't want to experience your symptoms again.

If you can't live without the money off or having proof on paper of your condition, and you don't mind going through your symptoms again (which might be hitting back a little harder depending on how long you've been gluten-free) then go for the challenge.

There are perks to each side, it's up to you to decide which perks are more valuable to you.

[Kirstie 1]

Well, you may be non-celiac gluten intolerant. It is much more commmon than celiacs, and the reaction can be just as severe. Such is the case with most people on this board. Gluten intolerance does not show up on a test, and unfortunately, is disregarded by most doctors.

Celiac testing has a false negative rrate of about 30%- so your chaces are sketchy of getting a positive, even if you survived the lengthy "gluten challenge" which seems unlikely, given the severity of your reaction.

I wonder if there is a possibility of doin an in-office gluten challenge? If you react quickly and negatively (passing out) perhaps a doctor could observe this firsthand and would be willing to dx based on your severe reaction.

Thanks for that info! I wasn't aware that just intolerance doesn't show up on a test, but that makes sense.

I think I'll try gluten for a the month, keep a food diary and compare my symptoms on gluten to the diary I kept when I was gluten-free!

The in-office test is also a great idea, thank you very much!

[saintmaybe 39]

After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.

I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to!

After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.

Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?

I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover I really don't want to suffer like that for 6 weeks!

Thanks

K x

I went through pretty much the exact same thing, except I was four or five months gluten free. I decided I HAD to know if it was celiac disease, and did do a gluten challenge. In the end, my celiac diagnosis was negative, but I have an enlightened gastroenterologist, and was diagnosed with gluten sensitivity.

In the U.S., this is still not a formally recognized diagnosis, although it's gaining a lot of traction in the established medical community. My primary care doctor is aware of it, and many of her patients are gluten free.

I've since found out that I have gluten sensitivity on both sides of the family, including tendencies towards alcoholism, depression, and Alzheimer's.

Probably the most direct evidence of gluten sensitivity is my brother, who tested positive for Ankylosing Spondylitis, and is now eating primal to get the inflammation down. I'm convinced I have it too, and have triggered a flare by going back on gluten for testing. Both my shoulders, my lower back, and my hip are stiff and sore to the point of not getting restful sleep at night. I'm going to see a rheumatologist next week to confirm the diagnosis, which is actually more of a diagnosis of elimination.

I'm glad I got my diagnosis though, because I feel I can help contribute to the research surrounding gluten sensitivity. Understanding this disorder, or disease process, is still in it's infancy. I'd say getting tested depends on your need to know, as well as the potential value you see a diagnosis adding to your life.

[love2travel 396]

Both ways have merits. I had to have the scope done because I simply did not believe I could have celiac. Can you say denial? At that time, I did not have obvious symptoms or feel at all eating gluten. I found out through genetic testing. My doctor told me my bloodwork was positive but at that time I did not really get it and thought that was not enough. Anyway, my doctor also wanted me to have a colonoscopy to see if anything else was happening. Thankfully there was not but the villi blunting was very obvious according to my gastroscopy and that is when I took it extremely seriously and have been strictly gluten free for about 15 months. I have no idea whether I have been glutened or not. But my regular bloodwork shows that my ttg is now negative, whereas before my numbers were off the charts positive. Retrospectively I see things I can now associate with celiac (i.e. miscarriages, weak tooth enamel, brittle fingernails...). Now my enamel and nails are far stronger.

Tough decision but personally if I did not get it done I would most likely not be avoiding gluten. The official diagnosis was necessary for me. It was also good to be informed of the extent of damage done.

But I can certainly understand why so many of those who have been off gluten for some time and feeling so much better refuse to go further. If gluten = pain + discomfort it would be so difficult to re-introduce something offensive to your body. Deliberately.

[srall 112]

I was in your shoes but I chose NOT to go back on gluten to test. A minor mishap with a creamy clam chowder put me in bed for three weeks, so eating a lot of gluten for several weeks wasn't going to happen. I had a family to take care of. Plus a diagnosis wasn't going to change my behavior. But some can survive the gluten challenge to get the diagnosis. It sounds like you're going for it so good luck!

[Kirstie 1]

Both ways have merits. I had to have the scope done because I simply did not believe I could have celiac. Can you say denial? At that time, I did not have obvious symptoms or feel at all eating gluten. I found out through genetic testing. My doctor told me my bloodwork was positive but at that time I did not really get it and thought that was not enough. Anyway, my doctor also wanted me to have a colonoscopy to see if anything else was happening. Thankfully there was not but the villi blunting was very obvious according to my gastroscopy and that is when I took it extremely seriously and have been strictly gluten free for about 15 months. I have no idea whether I have been glutened or not. But my regular bloodwork shows that my ttg is now negative, whereas before my numbers were off the charts positive. Retrospectively I see things I can now associate with celiac (i.e. miscarriages, weak tooth enamel, brittle fingernails...). Now my enamel and nails are far stronger.

Tough decision but personally if I did not get it done I would most likely not be avoiding gluten. The official diagnosis was necessary for me. It was also good to be informed of the extent of damage done.

But I can certainly understand why so many of those who have been off gluten for some time and feeling so much better refuse to go further. If gluten = pain + discomfort it would be so difficult to re-introduce something offensive to your body. Deliberately.

Wow what a strange way to be diagnosed! Glad to hear you've been successfully diagnosed and now know what's best for your health

I tried last evening to re-introduce gluten and woke up vomiting for an hour, ate cereal this morning nevertheless and although I don't feel nauseas from cereal, suffering cramps, fatigue and aches Can't believe there isn't another way!

[Kirstie 1]

I was in your shoes but I chose NOT to go back on gluten to test. A minor mishap with a creamy clam chowder put me in bed for three weeks, so eating a lot of gluten for several weeks wasn't going to happen. I had a family to take care of. Plus a diagnosis wasn't going to change my behavior. But some can survive the gluten challenge to get the diagnosis. It sounds like you're going for it so good luck!

I understand how you feel, after suffering painful vomiting last night and now fatigue, cramps and aches after eating just two gluten containing meals, I am re-considering ever listening/visiting a doctor with this again!!

[Kirstie 1]

It all depends on how much you need to be formally diagnosed VS. how much you don't want to experience your symptoms again.

If you can't live without the money off or having proof on paper of your condition, and you don't mind going through your symptoms again (which might be hitting back a little harder depending on how long you've been gluten-free) then go for the challenge.

There are perks to each side, it's up to you to decide which perks are more valuable to you.

Very true, I was just hoping there was some other way to be diagnosed that doesn't include poisoning myself for 6 weeks and dealing with sceptical doctors that treat me like a silly little girl!

[srall 112]

Kirstie, my mom had the same experience as you. She was gluten free for 2 years (sans diagnosis) and was still anemic. Her doctor convinced her to do the gluten challenge so they could do a scope. She was vomiting and (TMI alert) couldn't even get out of bed to go to the bathroom after the first gluten meal. She called the doctor and talked to the nurse, who was insistent that she needed to continue so they could get a diagnosis. Finally the doctor heard about the conversation, called my mom back and told her "For God's sake, stop! No more gluten." Hopefully your doctor gets it.

Sorry you got sick. I'm not one bit surprised though. Hope you're feeling better today.

[Monklady123 68]

For me personally I would never do it. And I haven't. I know that when I eat gluten I feel awful. If I don't eat it I'm fine. My doctor agrees, and based on "somewhat conclusive" blood work (weird, I know) she says "most likely celiac". I don't care if it is, or if it isn't. If it isn't then it's definitely gluten intolerance. Which amounts to the same thing in my book: giving up gluten entirely.

And if your doctor says to have the test because he's still convinced it's "only" IBS... well, why does it matter? I mean, if going gluten free has cured your "IBS" symptoms, or if it has cured your "celiac/gluten intolerant" symptoms, it seems to me that the main point is that your symptoms are cured! That should be the bottom line, in my non-medical opinion.

So like I said, I couldn't do it. I don't have time to be sick for that long, and I don't care if I don't have the biopsy. I feel great and that's all that counts!

[love2travel 396]

Wow what a strange way to be diagnosed! Glad to hear you've been successfully diagnosed and now know what's best for your health

I tried last evening to re-introduce gluten and woke up vomiting for an hour, ate cereal this morning nevertheless and although I don't feel nauseas from cereal, suffering cramps, fatigue and aches Can't believe there isn't another way!

Believe me - I was so shocked when my doctor told me I had celiac that I asked him to make sure the results had my name on the top. Even then I did not believe it. I love food too much to have celiac! And I teach cooking classes! Man, I was NOT impressed. However, that was 15 months ago and about 4 or 5 months into it I realized that it was not as bad as I first thought. It soon became part of my regular daily life. Chances are this diagnosis SAVED my life!

So sorry that you are so ill. I can relate in a way - I have chronic relentless pain, each and every day. Always. Especially bad at night. Though our pain is different I can sort of understand how icky and distraught you must feel. Whatever you decide, commit to your decision and feel confident about it. It does not matter what others say or think - it is ultimately up to you. It is YOUR body. You only have one. So, you have to do what is right for the body you do have.

[Skittles 3]

I was in the same situation. I went off it for about a month and I was starting to feel better, but my doctor wanted me to go back on gluten for a month to get the test. I decided to get the test done and I am happy that I did. It was kind of a relief when I found out that I was celiac because I finally had an answer to why i had all of these problems! And like someone else said, I get a tax break (I am in Canada) so I thought that was beneficial since gluten free foods and much more expensive.

[GFweightlifter 1]

I am a self- diagnosed gluten intolerant/ celiac. I tested negative for celiac disease on the blood test recently and the doctors would not do an endoscopy despite all my symptoms pointed to celiac disease (gas, bloat, chronic diarrhea, bruising, fatigue,lactose and other carbohydrate intolerances, just to name a few). I have not had a good experience with doctors concerning this. I've seen 4 different doctors and they all made me feel like I'm making it up. Just told me to take fiber and probiotics...oh and lots of prilosec. They all also seem to be more than willing to do colonoscopies, but seem uninterested in checking out my small intestines. Anyway....

So I decided 6 weeks ago to go gluten free and I feel great. A lot of my symptoms are gone or at least have lessened in severity and I'm starting to feel like a person again, rather than a zombie lol.

I won't try to get an "official" diagnosis. In the past 6 weeks I've been doing a lot of research and found that there is a high false negative rate for the blood test and I guess a lot of doctors are not doing endos correctly so that leads to a relatively high false negative rate for that too. With that in mind it's not worth it to me to intentionally "poison" and harm my body with gluten for an extended length of time just to get an official diagnosis. I really really hope that there will be a better way to test for this in the near future so we don't have to go through this mess!

[Charli61 4]

Good luck, yes the challenge stinks, but I do think it's the only way.

[Kirstie 1]

I am a self- diagnosed gluten intolerant/ celiac. I tested negative for celiac disease on the blood test recently and the doctors would not do an endoscopy despite all my symptoms pointed to celiac disease (gas, bloat, chronic diarrhea, bruising, fatigue,lactose and other carbohydrate intolerances, just to name a few). I have not had a good experience with doctors concerning this. I've seen 4 different doctors and they all made me feel like I'm making it up. Just told me to take fiber and probiotics...oh and lots of prilosec. They all also seem to be more than willing to do colonoscopies, but seem uninterested in checking out my small intestines. Anyway....

So I decided 6 weeks ago to go gluten free and I feel great. A lot of my symptoms are gone or at least have lessened in severity and I'm starting to feel like a person again, rather than a zombie lol.

I won't try to get an "official" diagnosis. In the past 6 weeks I've been doing a lot of research and found that there is a high false negative rate for the blood test and I guess a lot of doctors are not doing endos correctly so that leads to a relatively high false negative rate for that too. With that in mind it's not worth it to me to intentionally "poison" and harm my body with gluten for an extended length of time just to get an official diagnosis. I really really hope that there will be a better way to test for this in the near future so we don't have to go through this mess!

I'm sorry to hear that you've struggled with doctors too! I completely agree with your decision, at the end of the day its your body and you know better than anyone what hurts it!

I've decided to stay off gluten, just so a doctor can say "yes you are celiac" doesn't seem worth it, and there is obviously no guarantee they will do the test correctly! So what's the point in poisoning myself for 6 weeks, then recovering again for 4 weeks, 10 weeks of hell and tears is not worth it!

Thanks for taking the time to share everyone! I'm so lucky to have found this board full of wise and helpful people! I too hope that one day a better way of testing will be available, until then I will eat what makes me feel good, and be weary before ever asking a doctor again! (sad but true.)

[Kirstie 1]

Believe me - I was so shocked when my doctor told me I had celiac that I asked him to make sure the results had my name on the top. Even then I did not believe it. I love food too much to have celiac! And I teach cooking classes! Man, I was NOT impressed. However, that was 15 months ago and about 4 or 5 months into it I realized that it was not as bad as I first thought. It soon became part of my regular daily life. Chances are this diagnosis SAVED my life!

So sorry that you are so ill. I can relate in a way - I have chronic relentless pain, each and every day. Always. Especially bad at night. Though our pain is different I can sort of understand how icky and distraught you must feel. Whatever you decide, commit to your decision and feel confident about it. It does not matter what others say or think - it is ultimately up to you. It is YOUR body. You only have one. So, you have to do what is right for the body you do have.

I'm glad you are now living a healthier life and hopefully feeling much better for it!! After eating gluten Wednesday I spent the night vomiting, shaking and fatigued. I slept all of Thursday and came out in a rash on Saturday. There is no way I putting myself through that for 6 weeks in order to have a doctor tell me what I already know, gluten makes me sick!

Thanks for the support, and helping me realise that it is my body and my decision.

K x

[love2travel 396]

I'm glad you are now living a healthier life and hopefully feeling much better for it!! After eating gluten Wednesday I spent the night vomiting, shaking and fatigued. I slept all of Thursday and came out in a rash on Saturday. There is no way I putting myself through that for 6 weeks in order to have a doctor tell me what I already know, gluten makes me sick!

Thanks for the support, and helping me realise that it is my body and my decision.

K x

Thanks for your kind post! I cannot really say I feel much better physically (a little bit less muscle pain that I have been told is fibromyalgia) but the biggest thing is that I feel better mentally, knowing I am taking care of myself better. You know what? A diagnosis like this also forces you to take inventory of all aspects of your life (at least it did me) and I knew it was time to stop making poor, non-nutritious health choices.

Your symptoms are so horrid and sad. I really feel for you. Good for you for making the right choice for you! Remember that your body is very precious.

[anabananakins 37]

I've decided to stay off gluten, just so a doctor can say "yes you are celiac" doesn't seem worth it, and there is obviously no guarantee they will do the test correctly! So what's the point in poisoning myself for 6 weeks, then recovering again for 4 weeks, 10 weeks of hell and tears is not worth it!

6 weeks is likely not long enough to poison yourself anyway, I read everything I could to find a guaranteed time for the gluten challenge and all I found out is that everyone suggests something different. Well to be on the safe side, I did a 3 month challenge and still tested negative. Twice. Meh, went gluten free again (I'd been gluten free for a month on the paleo diet which is how I realised I had a problem with gluten) and felt amazing in 3 days. Never looked back. Glad you're getting there and I hope you feel completely well soon

[love2travel 396]

6 weeks is likely not long enough to poison yourself anyway, I read everything I could to find a guaranteed time for the gluten challenge and all I found out is that everyone suggests something different. Well to be on the safe side, I did a 3 month challenge and still tested negative. Twice. Meh, went gluten free again (I'd been gluten free for a month on the paleo diet which is how I realised I had a problem with gluten) and felt amazing in 3 days. Never looked back. Glad you're getting there and I hope you feel completely well soon

That is true. My doctor told me I must eat gluten for at least 3 months and eat the equivalent of 3 pieces of bread per day. It was easy for me but not for many of you.