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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Stomach Problems :(
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I have been getting stomach pain mostly in the right side of my stomach in the middle , under the ribs and sometimes near the bottom of my stomach. I also get a lot of rumbling and gurgling which is quite painful. This all started in May 2008 I don't remember how, I think it might have been after I got a virus but i'm not 100 % sure, it just started out of the blue I can't really remember properly. I was diagnosed with celiac in 2003 and never had any stomach problems after that , the occasional stomach pain here and there but nothing that lasted long.

In May 2008 when my stomach pain started , I had to go to A&E hospital at midnight because the pain was really bad , but the doctor's never found out what was wrong and just have me a lot of painkillers. Throughout the rest of 2008 my stomach pains were on and off it was really random. Than after a couple of weeks with no stomach pain it started up again in october 2008 and has never got better :(

I have been to see my celiac doctor and he says the stomach pain i'm getting is not connected to my celiac disease. But he has no idea what is causing the pain ? I thought it might be food intolerances and i'm seeing a dietitan at the moment but he can't find anything obvious on my food and symptoms diary. I get pain now 90 % of the time after I have eaten. Always after lunch and dinner , but not all the time after breakfast.

To get rid of the pain I take colfac tablets also known as Mebeverine. Quite a lot of the time if I go to the toilet my stomach gets better after going, also a shot of alcoholic drink normally calms my stomach down.

1 doctor said I had IBS but he also told me I was getting pain because I didn't stick to the gluten free diet which I do , I haven't had any gluten in 7 years. My celiac doctor doesn't really listen to me and my symptoms and tells me to take Mebeverine if my stomach gets bad.

Now I really don't have a clue what is going on with my stupid stomach :( I have also had back problems since I was 17 , i'm 23 now so i'm kinda fed up with health problems lol.

I was just wondering if anyone had similar stomach pain to me on the right side under the ribs in the middle etc, also the painful stomach rumbles and gurgling , or if anyone knows if my problem could be connected to celiac ? I have looked online and have no idea really how to solve the pain ? :(

Sorry if the post is too long , I wanted to write in details incase anyone has the same or similar problems.

Many Thanks :)

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Yes I have been in bed all day with that exact same problem. I have been seeing an allergist & found out I have food allergies & intolerance. I tried to reintroduce other grain (i.e rice), and that pain you are describing has persisted since then (a week ago). I also have diarrhea with undigested food and my DH sores flared up with fluid in them, and my lymph nodes under my chin swelled up like a golf ball. I cannot have ANY grains...in fact i am starting all over again with the elimination diet. I'm starting with Peas this time and I'm blending them since my stomach isn't digesting food :-( I went to Mayo clinic for the pain on the right side of my stomach and the doctors said it was sludge in my gallbladder, but i think it's a reaction in the duodenum to grains or whatever I may not be tolerating. Try an elimination diet. Try one food for 3 days and then introduce a new food for 3 days and so on, and maybe consider seeing an allergist? I know that pain is miserable!

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I have been getting stomach pain mostly in the right side of my stomach in the middle , under the ribs and sometimes near the bottom of my stomach. I also get a lot of rumbling and gurgling which is quite painful. This all started in May 2008 I don't remember how, I think it might have been after I got a virus but i'm not 100 % sure, it just started out of the blue I can't really remember properly. I was diagnosed with celiac in 2003 and never had any stomach problems after that , the occasional stomach pain here and there but nothing that lasted long.

In May 2008 when my stomach pain started , I had to go to A&E hospital at midnight because the pain was really bad , but the doctor's never found out what was wrong and just have me a lot of painkillers. Throughout the rest of 2008 my stomach pains were on and off it was really random. Than after a couple of weeks with no stomach pain it started up again in october 2008 and has never got better :(

I have been to see my celiac doctor and he says the stomach pain i'm getting is not connected to my celiac disease. But he has no idea what is causing the pain ? I thought it might be food intolerances and i'm seeing a dietitan at the moment but he can't find anything obvious on my food and symptoms diary. I get pain now 90 % of the time after I have eaten. Always after lunch and dinner , but not all the time after breakfast.

To get rid of the pain I take colfac tablets also known as Mebeverine. Quite a lot of the time if I go to the toilet my stomach gets better after going, also a shot of alcoholic drink normally calms my stomach down.

1 doctor said I had IBS but he also told me I was getting pain because I didn't stick to the gluten free diet which I do , I haven't had any gluten in 7 years. My celiac doctor doesn't really listen to me and my symptoms and tells me to take Mebeverine if my stomach gets bad.

Now I really don't have a clue what is going on with my stupid stomach :( I have also had back problems since I was 17 , i'm 23 now so i'm kinda fed up with health problems lol.

I was just wondering if anyone had similar stomach pain to me on the right side under the ribs in the middle etc, also the painful stomach rumbles and gurgling , or if anyone knows if my problem could be connected to celiac ? I have looked online and have no idea really how to solve the pain ? :(

Sorry if the post is too long , I wanted to write in details incase anyone has the same or similar problems.

Many Thanks :)

I was having pain on the right side, under my rib cage after eating. I was certain it was my gallbladder. I had tests done, which were inconclusion. They did an edoscopy and colonoscopy to rule out anything else. That is actually when they found my celiacs. My gallbladder is out and I don't have that pain anymore. Though I didn't have stones, my gallbladder was very swollen when they removed it. I understand gallbladder issues are come in celiacs.

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stomach pain... and back problems.. have u considered that some of your pain might be muscular??? because i am having issues with this pretty bad. im a massage therapist and my body is WRECKED... back muscle spasms... illiopsoas spasms .. oblique spasms...

sometimes when the back is spasming- it radiates into my ab muscles..

i actually went into a walk in clinic one day because my diaphraghm and rectus abdominus (on the right side) were severely spasming so much that i was crying.

i was so lucky to get an Osteopath at the clinic- he felt around, and said he thought my GB was ok, and my ovaries were ok... he could tell that i had oblique spasms.. and really tight back... he adjusted me and explained that a messed up back can send "hyper" signals to the intestines and cause "D".

he prescribed muscle relaxers- and they do help.

it's confusing tho- sometimes i honestly cannot tell you where the muscle spasms stop and the intestinal gurgling begins.

i also just found out that i have Hypothyroid which can contribute to muscle spasms.

i assume that vitamin deficiencies can also cause spasms- as is common in gluten intolerance ( the deficiencies).

so, maybe you should find an Osteopath- they're great- and maybe they will have some answeres for you

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My best guess would be that you have become more sensitive to trace contamination over time. The diet which worked for you very well earlier on no longer works for you. That happened to me. You could try to cut out processed foods and other possibly contaminated foods and go on a whole foods diet. See if that works better for you. A couple of weeks on it should be enough to find out.

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Try the elimination diet and if you still have pain I would suspect gallbladder issues. I had mine out, like the previous post said no stones but it was terribly swollen and adhered to my liver with scar tissue.

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Yes I have been in bed all day with that exact same problem. I have been seeing an allergist & found out I have food allergies & intolerannce. I tried to reintroduce other grain (i.e rice), and that pain you are describing has persisted since then (a week ago). I also have diarrhea with undigested food and my DH sores flared up with fluid in them, and my lymph nodes under my chin swelled up like a gold ball. I cannot have ANY grains...in fact i am starting all over again with the elimination diet. I'm starting with Peas this time and I'm blening them since my stomach isn't digesting food :-( I went to Mayo clinic for the pain on the right side of my stomach and the doctors said it was sludge in my gallbladder, but i think it's a reaction in the duodenum to grains or whatever you may not be tolerating. Try an elimination diet. Try one food for 3 days and then introduce anew food for 3 days and so on, and maybe consider seeing an allergist? I know that pain is miserable!

The problem really sucks. Good luck with the elimination diet and I hope you can find out what is wrong, and get better soon :) I have been doing an elimination diet with my dietitan at the moment , I had to avoid potatoes for 3 weeks ( so far had 18 days without potatoes ) after a few days the pain seemed to improve but a few days later it got really bad again. I will try and see an allergist Thanks for the reply and advice :)

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I was having pain on the right side, under my rib cage after eating. I was certain it was my gallbladder. I had tests done, which were inconclusion. They did an edoscopy and colonoscopy to rule out anything else. That is actually when they found my celiacs. My gallbladder is out and I don't have that pain anymore. Though I didn't have stones, my gallbladder was very swollen when they removed it. I understand gallbladder issues are come in celiacs.

Thanks for the reply and advice :) I had an ultrasound scan on my liver in february , and when I asked my doctor would that see the gallbladder too , he said yes , is that right ? I will have to ask my doctor again about the gallbladder . Which tests did you have done for your gallbladder ?

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stomach pain... and back problems.. have u considered that some of your pain might be muscular??? because i am having issues with this pretty bad. im a massage therapist and my body is WRECKED... back muscle spasms... illiopsoas spasms .. oblique spasms...

sometimes when the back is spasming- it radiates into my ab muscles..

i actually went into a walk in clinic one day because my diaphraghm and rectus abdominus (on the right side) were severely spasming so much that i was crying.

i was so lucky to get an Osteopath at the clinic- he felt around, and said he thought my GB was ok, and my ovaries were ok... he could tell that i had oblique spasms.. and really tight back... he adjusted me and explained that a messed up back can send "hyper" signals to the intestines and cause "D".

he prescribed muscle relaxers- and they do help.

it's confusing tho- sometimes i honestly cannot tell you where the muscle spasms stop and the intestinal gurgling begins.

i also just found out that i have Hypothyroid which can contribute to muscle spasms.

i assume that vitamin deficiencies can also cause spasms- as is common in gluten intolerance ( the deficiencies).

so, maybe you should find an Osteopath- they're great- and maybe they will have some answeres for you

My back problems were put down to bone pain rather than muscle pain. My stomach pain I have thought could be muscle pain as it would always get bad when I did stomach muscle exercise to help my back. Sounds like your having a bad time with spasms :( That's interesting about back and stomach problems being connected. I don't think that's my problem though as my back pain started in 2005 and my stomach pain started in 2008 , surely they would have started at the same time if they were connected ? Sounds like it must be hard to tell the difference.

I have been to see a couple of osteopath's , 1 was really helpful , 1 was a really stupid person :P and 1 osteopath saw me for a couple of months before they reliased treatment was not working lol. Thanks for the reply and advice :)

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My best guess would be that you have become more sensitive to trace contamination over time. The diet which worked for you very well earlier on no longer works for you. That happened to me. You could try to cut out processed foods and other possibly contaminated foods and go on a whole foods diet. See if that works better for you. A couple of weeks on it should be enough to find out.

That's interesting , I will have to try a whole foods diet sometime. Thanks for the idea :)

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Try the elimination diet and if you still have pain I would suspect gallbladder issues. I had mine out, like the previous post said no stones but it was terribly swollen and adhered to my liver with scar tissue.

I am doing the elimination diet at the moment with my dietitan , I have been told to cut potatoes out for 3 weeks ( done 18 days so far ) . Did you have any tests on your gallbladder to find it was badly swollen or you just found out after it was taken out ? Thanks for the reply and advice :)

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The problem really sucks. Good luck with the elimination diet and I hope you can find out what is wrong, and get better soon :) I have been doing an elimination diet with my dietitan at the moment , I had to avoid potatoes for 3 weeks ( so far had 18 days without potatoes ) after a few days the pain seemed to improve but a few days later it got really bad again. I will try and see an allergist Thanks for the reply and advice :)

Good luck with the elimination diet...i think it will really help and seeing an allergist/immunologist will help as well :-)

I got results from my food allergy blood work. I am allergic to nightshade veggies...which includes potatoes! NASTY potatoes. Um try eliminating all related nightshades. It doesn 't make sense to only eliminate potatoes when there is a possiblitiy of cross reaction to other veggies in that nightshade family, which are tomatos, chillies (ALL of them), eggplant, and tobacco plant. Do a google search on nightshade vegetables. Also try cutting out other grains and also cut out preservatives. I am deathly allergic to Xanthan GUM and Carageenan, food additives. I go into anaphylactic shock :-( BUT what cause the pain in the right side of my stomach and my lower abs was the RICE and the stupid sunflower seeds and pumkin seeds (Gluten free on the label). Honestly the only things that I can eat and feel good with are pure whole organic foods. I have been working with my allergist for four months now and I know. You just need a food diary to make notes about what symptoms u have and document them with the foods that you are eating. When I re-introduced potatos, my left ear began to drain and it really hurt! ...Among other thing. And cut back on dairy and those nasty soy, almond and rice milk products. Too many additives including Xanthan Gum...etc. Strawberries cause a pseudo-inflammatory response also. Consider cutting back on Lectins...

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My back problems were put down to bone pain rather than muscle pain. My stomach pain I have thought could be muscle pain as it would always get bad when I did stomach muscle exercise to help my back. Sounds like your having a bad time with spasms :( That's interesting about back and stomach problems being connected. I don't think that's my problem though as my back pain started in 2005 and my stomach pain started in 2008 , surely they would have started at the same time if they were connected ? Sounds like it must be hard to tell the difference.

I have been to see a couple of osteopath's , 1 was really helpful , 1 was a really stupid person :P and 1 osteopath saw me for a couple of months before they reliased treatment was not working lol. Thanks for the reply and advice :)

Be aware that with Celiac Disease your Potassium can drop down low due to Malabsorption, which DOES casue mauscle spasms. I didn't relialize why my feet were cramping when I walked at the mall. it was soooo painful I had to sit on the floor. I was taking tumbling/gymnastics classes and I had a trainer. I went the the ER a few times (before I knew about Celiac) and every time my potassium was very very low. They would hook me up to an IV to give me fluids and potassium or give me this huge potassium pill. I was really sick. A potassium supplement (Gluten free) couldn't hurt right?

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I am doing the elimination diet at the moment with my dietitan , I have been told to cut potatoes out for 3 weeks ( done 18 days so far ) . Did you have any tests on your gallbladder to find it was badly swollen or you just found out after it was taken out ? Thanks for the reply and advice :)

They did an ultrasound to rule out gallstones and when that was clear they did a HIDA scan that showed that my gallbladder was not functioning. When they took it out they saw the swelling and scar tissue! Hope this helps!

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They did an ultrasound to rule out gallstones and when that was clear they did a HIDA scan that showed that my gallbladder was not functioning. When they took it out they saw the swelling and scar tissue! Hope this helps!

Same for me, except the HIDA scan was not conclusive. During the HIDA scan, they give you a medication to cause your gallbladder to contract as it does with digestion, this tells them how it is functioning. Mine did function, but the pain was reproduced during that portion of the test. That is what made by GI confident the gallbladder had to come out, even with finding the celiac.

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Sounds like you should get your gallbladder checked out? The HIDA scan the others mentioned sounds good.

Do you get nausea with the pain? Pain worse after eating fatty foods? Pain less when you eat non-fatty foods?

My mom had a severely infected gall bladder, she suffered for a few months with on-and-off pain and doctors couldn't say what it was. Eventually one night the pain was so bad she was taken to the ER, they did a ultrasound and picked up some gravel in the gallbladder. The doctor said not enough to suspect gallbladder problems, but decided to operate anyway and have a look. After it was removed, he told her that her gallbladder was about to burst it was so bad 0.o

She's feeling much better with it out, needless to say :)

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Good luck with the elimination diet...i think it will really help and seeing an allergist/immunologist will help as well :-)

I got results from my food allergy blood work. I am allergic to nightshade veggies...which includes potatoes! NASTY potatoes. Um try eliminating all related nightshades. It doesn 't make sense to only eliminate potatoes when there is a possiblitiy of cross reaction to other veggies in that nightshade family, which are tomatos, chillies (ALL of them), eggplant, and tobacco plant. Do a google search on nightshade vegetables. Also try cutting out other grains and also cut out preservatives. I am deathly allergic to Xanthan GUM and Carageenan, food additives. I go into anaphylactic shock :-( BUT what cause the pain in the right side of my stomach and my lower abs was the RICE and the stupid sunflower seeds and pumkin seeds (Gluten free on the label). Honestly the only things that I can eat and feel good with are pure whole organic foods. I have been working with my allergist for four months now and I know. You just need a food diary to make notes about what symptoms u have and document them with the foods that you are eating. When I re-introduced potatos, my left ear began to drain and it really hurt! ...Among other thing. And cut back on dairy and those nasty soy, almond and rice milk products. Too many additives including Xanthan Gum...etc. Strawberries cause a pseudo-inflammatory response also. Consider cutting back on Lectins...

Thanks I hope so :) It's funny today someone rang up to recommend me an allergist who is suppose to be really good :P

That sucks about the nightshades. I don't really eat any of the other nightshades vegetables but I will make sure I check what I eat for tomatoes , chilli's etc. I will also cut out other grains. The Xanthan Gum and Carageenan allergies sound really bad :( Stupid Rice and seeds. Sounds like the allergist helped a lot :) I had to make a food and symptoms diary , my dietitian has been checking it for intolrences. I don't like the sound of re introducing food that gives you symptoms , my dietitian said I might have to do it he called it a food challenge lol.

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Be aware that with Celiac Disease your Potassium can drop down low due to Malabsorption, which DOES casue mauscle spasms. I didn't relialize why my feet were cramping when I walked at the mall. it was soooo painful I had to sit on the floor. I was taking tumbling/gymnastics classes and I had a trainer. I went the the ER a few times (before I knew about Celiac) and every time my potassium was very very low. They would hook me up to an IV to give me fluids and potassium or give me this huge potassium pill. I was really sick. A potassium supplement (Gluten free) couldn't hurt right?

I don't think I have ever had my potassium levels tested before. I found out I had Vitamin D deficiency that was apparently because I was celiiac. I will ask my doctor to test my potassium levels. Sounds like low potassium levels made you really ill :( I hope your levels have improved now ?

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They did an ultrasound to rule out gallstones and when that was clear they did a HIDA scan that showed that my gallbladder was not functioning. When they took it out they saw the swelling and scar tissue! Hope this helps!

Cool I had never heard of a HIDA scan before I will ask my doctor thanks :)

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Same for me, except the HIDA scan was not conclusive. During the HIDA scan, they give you a medication to cause your gallbladder to contract as it does with digestion, this tells them how it is functioning. Mine did function, but the pain was reproduced during that portion of the test. That is what made by GI confident the gallbladder had to come out, even with finding the celiac.

That's interesting how the scan works , thanks for the information.

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Sounds like you should get your gallbladder checked out? The HIDA scan the others mentioned sounds good.

Do you get nausea with the pain? Pain worse after eating fatty foods? Pain less when you eat non-fatty foods?

My mom had a severely infected gall bladder, she suffered for a few months with on-and-off pain and doctors couldn't say what it was. Eventually one night the pain was so bad she was taken to the ER, they did a ultrasound and picked up some gravel in the gallbladder. The doctor said not enough to suspect gallbladder problems, but decided to operate anyway and have a look. After it was removed, he told her that her gallbladder was about to burst it was so bad 0.o

She's feeling much better with it out, needless to say :)

Yeh the HIDA scan sounds like a good idea. I don't get nausea , and I used to think fatty foods made the pain worse but I don't think that anymore.

Wow that's really bad what happened to your mom's gall bladder. Im glad she feels better now :)

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After starting my Gluten Free diet (about 1 week after starting) I started to have stomach ache's where the bloating feeling used to be. I read in another thread that others have had aches or pains after beginning the gluten-free diet. I'm hoping mine goes away. Anyone one else have aches or pains after starting a Gluten Free diet? I hope it goes away. Guess I need to go back to the Dr. or at least report the aches in each side, sometimes it moves around but mostly int the sides.

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After starting my Gluten Free diet (about 1 week after starting) I started to have stomach ache's where the bloating feeling used to be. I read in another thread that others have had aches or pains after beginning the gluten-free diet. I'm hoping mine goes away. Anyone one else have aches or pains after starting a Gluten Free diet? I hope it goes away. Guess I need to go back to the Dr. or at least report the aches in each side, sometimes it moves around but mostly int the sides.

hhhmmmmm- now im wondering- if -- maybe as the body starts to get busy healing those villi- maybe there's a lot more circulation and movement down there- and maybe that's what some are feeling- an increase in activity down there??

(im just thinking outloud)

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    •   Could try causally asking your family to get the blood test done next time they are at the doctors. They could have it and only have minor or no symtoms to it. There is a form of it called silent celiacs with no outward symptoms but it is still destroying your villi and causing your body to slowly degrade. Doing so could shed some light on other issues, make family more understanding to your issues, and help them out in the long run.    I was adopted at only a few weeks old, so my issues run a bit deeper with both leaning about this disease and getting anyone in the family to understand it. Does not help my birth mother still to this day refuses to release updated medical records or accept any kind of contact.    >.> I give advice all the time, I like to feel useful to others, and can be oblivious to others feelings and reactions due to a form of autism called Aspergers.  Bit of a pain, but the feeling of being of use to others is very rewarding even if sometimes confused with being helpful over being a ass or someone overly intrusive.    I just wish others had helped me out earlier with this disease.   PS Anonymous, you keep posting on older threads, ALOT recently. Not a bad thing, just something I picked up on and piqued my interest/concern with how out of date some information might be.
    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
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