Please Please Please Please Help

[Chris E]

Hi all,

As some of you are probably aware i have had celiac symptoms since feeling extremely fatigued nearly a year ago with my symptoms including tiredness, D (on and off), regular floting/yellowish/frothy stools, join pain, bone pain, back ache, severe brain fog (although this has cleared up now) and depression/anxiety. When this first started i lost a lot of weight, but have since put it back on and i am now rather over weight with a big appetite.

When i first started to feel unwell i kept getting pain and aches behind my breast bone, armpits and chest area (im 20 year old male) These went away, but have recently returned and i went to my doctor today and she listened to my chest and felt the breast bone and said that it was nothing to worry about. Another major problem that i have experienced the whole time is a tingling burning feeling down the backs of my legs when i walk.

I regularly seem to get pain in my stomach area (upper left hand side) althought the whole of my intestines seem to grumble at me often and i have extreme wind. During this time i have also had shingles which hurt like crazy and now i seem to get an ithy spot keep coming and going on my right arm (weird eh?).

As for testing i've had a colonoscopy, a white cell scan and barium swallow. I have also had blood tests for celiac disease which came back negative. A certain liver enzyme test seem to come back elevated everytime they are tested although my doctor said that this can happen and is nothing to worry about ( am i right in thinking this could be celiac related? As for the white cell scan..... the GI said that it hinted at some inflammation in the small intestine and he therefore ordered a barium swallow to look at this further. Conclusion was that this showed nothing and therefore said there was nothing wrong with me...... i got the good old IBS diagnosis. Is a barium follow through sufficeint to look for possible celiac? Would inflammation of the small intestine hint at celiac?

When i met with my doctor she has referred me for a second opinion with another GI, but says she does not at all think it is celiac related because the blood tests are fine (don't know what tests they have done.... i live in UK). Could i still be celiac with this negative blood work?

Sorry to go on for a bit, but i now really can't take much more of feeling like this everyday. I know its not "depression/anxiety" something is causing it. What afe peoples viewpoint of my symptoms/tests? Has anybody else had a simialr expereince?

Thank you

Chris

[CarlaB]

Chris, you can have celiac and have negative test results. The Barium test is not for celiac ... the test for celiac is a blood test followed by biopsies of the small intestine.

Have you tried the gluten-free diet since your testing came back negative? Some people respond very favorably to the gluten-free diet and all their symptoms are resolved even though the testing was negative.

Another avenue to pursue if you haven't responded to the gluten-free diet would be looking at Lyme Disease, which causes symptoms that are just about the same as the celiac symptoms ... in fact, many of us with Lyme also are gluten intolerant.

[Ursa Major]

Chris, the blood tests are not very reliable. There are many people who have negative bloodwork, but a positive biopsy.

IBS is a junk diagnosis. Your bowels are irritated, obviously something is causing that. To call a symptom a disease is ridiculous. Let's look for the cause! All your symptoms could be caused by celiac disease/gluten intolerance. Your doctors are clueless, stop listening to them.

The barium test is useless for diagnosing/ruling out celiac disease.

At this point I think you ought to just try the gluten-free diet to see if it helps, forget your stupid doctors. You need to get better and take things into your own hands. Nobody can stop you from eating gluten-free. If it helps, stay with the diet.

[Chris E]

Hi

I fullyappreciate your replies. So i still have hope that it could be celiac eh? I don't actually want to try the gluten free diet yet becasue i have an appointment next month with a new GI for a second opinion on my symtoms. Hopefully he may pick it up this time and suggest a biopsy of the small intestine, therefore it is probably worth being on gluten for another month to see, so that i don't begin to heal beforehand.

Also, i don't think my family would be supportive without an official diagnosis. They think it's "all in the mind" and accuse me of looking into to much. GRRRRR!!!!!

Basically, it is reading the posts on this board and the fact that a test has hinted at some inflammation of the small intestine that is keeping me from going crazy. The knowing that symptomns could be celiac even though my blood work is negative.

Thank you again for your help. Would also appreciate any comments/suggestions at all from anyone.

Thanks again

Chris

[nikki-uk]

Hi Chris -

I'm in the UK and my hubby and son have celiac disease.

My husband had alot of the symptoms you describe (chest pain,armpit, bone etc....) and spent an entire month in hosp while the docs all scratched their heads ummimg and ahhing as why my husband was so weak he couldn't get out of bed unaided and was wasting away.

I might add those symptoms all disappeared once gluten-free.

Hubby had all the tests you mention and then some I think!!!

My hubby also had a high white cell count and very high inflammation markers - docs said ''but we know it's not celiac disease as the bloods were negative''

Luckily - when hubby had a colonoscopy (docs were sure it was Crohns) they also did a endoscopy with biopsies.

Low and behold - even though the bloods were negative his biopsies showed villous atrophy.

Sooo, you most definitely can have celiac disease with neg bloods!!!!

If I were you I wouldn't go gluten-free just yet....hang on until you've seen the gastro doc and ask him for an endoscopy EVEN THOUGH your bloods were neg.....and at the same time the biopsy can rule anything else out.

If you can manage to get a diagnosis you will be entitled to prescription gluten-free foods.

If you think your doc won't believe that you can still be a coeliac with neg bloods, google ''seronegative coeliac disease''

Good Luck!!

[VegasCeliacBuckeye]

Don't rule out "non-celiac-gluten-sensitivity"

[aikiducky]

And don't be shy to outright ask the GI for a biopsy, don't wait for them to suggest it.

Pauliina

[Fiddle-Faddle]

l

When i met with my doctor she has referred me for a second opinion with another GI, but says she does not at all think it is celiac related because the blood tests are fine (don't know what tests they have done.... i live in UK). Could i still be celiac with this negative blood work?

Find out EXACTLY what bloodwork was done and EXACTLY what the numbers were.

My doctor either misread my tests, or was an idiot and didn't realize that a high IgG means a problem with gluten, even in the absence of high IgA or transglutaminase.

Bloodwork is often misread or misunderstood by the docs. Sad, but true.

It's up to you if you want to go for an endoscopy.

I agree with Ursula--if you try the gluten-free diet and get relief, that's your answer right there. Villi damage is not visible to to the naked eye, and it's patchy, so if the doc doesn't happen to biopsy a section that's damaged, he'll just tell you you are fine, even if the other 22 feet of your intestines are totally destroyed. And then you'll end up trying the diet anyway, out of desperation. Why not cut out an intrusive and mildly risky test and go straight for the diet?

[Chris E]

Hi Chris -

I'm in the UK and my hubby and son have celiac disease.

My husband had alot of the symptoms you describe (chest pain,armpit, bone etc....) and spent an entire month in hosp while the docs all scratched their heads ummimg and ahhing as why my husband was so weak he couldn't get out of bed unaided and was wasting away.

I might add those symptoms all disappeared once gluten-free.

Hubby had all the tests you mention and then some I think!!!

My hubby also had a high white cell count and very high inflammation markers - docs said ''but we know it's not celiac disease as the bloods were negative''

Luckily - when hubby had a colonoscopy (docs were sure it was Crohns) they also did a endoscopy with biopsies.

Low and behold - even though the bloods were negative his biopsies showed villous atrophy.

Sooo, you most definitely can have celiac disease with neg bloods!!!!

If I were you I wouldn't go gluten-free just yet....hang on until you've seen the gastro doc and ask him for an endoscopy EVEN THOUGH your bloods were neg.....and at the same time the biopsy can rule anything else out.

If you can manage to get a diagnosis you will be entitled to prescription gluten-free foods.

If you think your doc won't believe that you can still be a coeliac with neg bloods, google ''seronegative coeliac disease''

Good Luck!!

Hi Nikki,

Thank you! Like i say it is the people on here who are keeping me sane. I have lost all trust i used to have in doctors. Further questions though..... how can celiac cause pain in the rib cage area including behind the brest bone, under arm, shoulder, back etc? I know how it can cause stomach problems and that vitamin def can cause the bone pain, tingling etc? Any idea anyone? Also how does the UK gluten free prescription work?

Thanks in advance

Chris

[NY547]

Hi Chris, sorry I don't know how the perscription plan works in the UK, but I just had to reply to your thread.

You have described my daughter's history (age 15) to a T. She also has had negative blood work (3 years ago she did have an elevated gliadin IgG, but with the newer supposedly better tests, all came back negative) Last October she started getting extremely fatigued, couldn't even stand up long enough to take a shower. She has missed a ton of school this year. They did an upper GI because of the pain in her upper left stomache, it came back normal. She gets a pain just beneath her left breastbone which can become quite excruciating. They did an EKG due to slightly elevated blood pressure and she was getting shortness of breath. They ruled out H pylori, lyme, mono and a host of others. Her bilirubin (liver enzyme) is also elevated, but not the other liver enzymes.

My aunt has celiac, which is why I initially had her tested, she has had many of the symptoms since early childhood. Excema, poor tooth enamel, stomache issues, now headaches and gets these bouts of fatigue. Plus the same pain as yours, on the left side. I am still deciding whether to have an endoscopy done. They are currently treating her for depression. (though she is not in my oppinion).

I can relate to your comment about your family not being supportive. The only one who is helpful is my aunt, the one with confirmed celiacs. Most everyone else thinks it's just in our minds, and I am making too much out of it, after all, the blood work came back negative! I refuse to wait another 10 years until real damage occurs. My daughter did respond well to a gluten-free diet, and another time, in the past, I tried it without telling her. 2 weeks into it, she ate a bagel for breakfast and became extremely sick. I'm pretty sure there is a connection there-lol. She is eating a regular diet again just in case we decide to try the endoscopy. If it comes back negative, I will really be labelled as the crazy mom!

If you go with the endoscopy, please keep us informed. And like someone else mentioned, it can be very patchy, so be sure to ask for no less than 5 samples. There were some great articles I found through another thread at www.thefooddoc.com written by Dr Scot Lewey. He states that up to 20% of people with negative blood work will show signs of celiac on a biopsy. This figure was also quoted to me from my daughter's GI when he offered to do the endoscopy.

Good luck!

[ravenwoodglass]

My daughter did respond well to a gluten-free diet, and another time, in the past, I tried it without telling her. 2 weeks into it, she ate a bagel for breakfast and became extremely sick. I'm pretty sure there is a connection there-lol.

Good luck!

There sure is a connection, what you just did here was a very valid way of diagnosing a gluten problem. It is how I was finally diagnosed after a lifetime of misdiagnosis. What you did was a gluten challenge, it was positive and she does have a problem with gluten no matter what the blood tests say.

[nikki-uk]

Hi Nikki,

Thank you! Like i say it is the people on here who are keeping me sane. I have lost all trust i used to have in doctors. Further questions though..... how can celiac cause pain in the rib cage area including behind the brest bone, under arm, shoulder, back etc? I know how it can cause stomach problems and that vitamin def can cause the bone pain, tingling etc? Any idea anyone? Also how does the UK gluten free prescription work?

Thanks in advance

Chris

Do you know Chris, - docs could never really give an answer as to why my hubby suffered terrible chest & rib pain (even took him to A+E numerous times 'cos he thought he was having a heart attack!)

If I had to hazard a guess I'd say it was the 'reflux' (where stomach acid comes back up the oesophogeal tract)

Hubby was also found to have a hiatus hernia which alot of coeliacs get.

Another possible cause of chest pain is an electrolyte disturbance caused by constant diarrhoea.

His armpit pain seemed to be caused by a constant swollen lymph gland - it went away once gluten-free - but that's a sign of an immune system under stress.

Regarding the prescription system - once you have a (biopsy) diagnosis of celiac disease you are entitled to free membership to Open Original Shared Link

They then send you a 'handbook' (listing loads of mainstream brand foods which are gluten-free)

At the front of this book is a list of all prescribable products.

As an adult male you are entitled to 18 units of gluten-free foods a month.

You then go to your g.p ...tell him you've been dx with celiac disease and are entitled to some prescription foods.

We usually get some bread, pasta and flour.

Most gp's are not prepared to prescribe without a biopsy proven diagnosis.

However I think you can purchase the 'handbook' from CUK (without a 'formal' dx)

[loraleena]

Why don't you get a stool test through enterolab. They can't diagnose celiac, but can diagnose gluten intolerance. This is how I found out.

[Murph]

I used to have the ribcage pain too before going gluten-free. Could barely breathe sometimes.

Doesn't happen anymore.

[Murph]

.

[grey]

Don't let anyone tell you it's all in your head. I did let my doctors, and I think rheumatologists are often especially bad, tell me I was just "depressed" or "stressed" and it would all get better on its own. I let my family and friends convince me I was really just kind of a hypchondriac with an 'occasional' migraine.

You know your body better than anybody else!! I lucked out with a doctor who ran the tests when I had given up on myself. And I've learned so much here-every day I'm learning about how something else I suffered and ignored or told myself I was overreating to was a symptom that I should have paid attention to- your body IS NOT supposed to work like that!!!

Oh, and keep in mind that celiac disease, like other autoimmune 'flares' - it's not consistent. That often makes md's think what you have isn't that serious. You'd think they'd learn.

Take care of yourself!

[KarenDianne]

Hi - I also have that darn pain in my side and up under my ribs...sometimes it's really difficult...painful. I do think the reflux idea is valid and I also believe it's trapped gas from our diets (or lack of) and trapped air...sometimes Gas-X will help me - other times nothing helps...except eating mashed potatoes. Honestly, when I have this pain, I often cook mashed potatoes and it really does seem to help. Sounds dumb but it works for me. Another thing I do...maybe psychological...maybe not...I hold a heating pad on my stomach. It actually does work. Hope this helps. Take care - KarenDianne

Do you know Chris, - docs could never really give an answer as to why my hubby suffered terrible chest & rib pain (even took him to A+E numerous times 'cos he thought he was having a heart attack!)

If I had to hazard a guess I'd say it was the 'reflux' (where stomach acid comes back up the oesophogeal tract)

Hubby was also found to have a hiatus hernia which alot of coeliacs get.

Another possible cause of chest pain is an electrolyte disturbance caused by constant diarrhoea.

His armpit pain seemed to be caused by a constant swollen lymph gland - it went away once gluten-free - but that's a sign of an immune system under stress.

Regarding the prescription system - once you have a (biopsy) diagnosis of celiac disease you are entitled to free membership to Open Original Shared Link

They then send you a 'handbook' (listing loads of mainstream brand foods which are gluten-free)

At the front of this book is a list of all prescribable products.

As an adult male you are entitled to 18 units of gluten-free foods a month.

You then go to your g.p ...tell him you've been dx with celiac disease and are entitled to some prescription foods.

We usually get some bread, pasta and flour.

Most gp's are not prepared to prescribe without a biopsy proven diagnosis.

However I think you can purchase the 'handbook' from CUK (without a 'formal' dx)

[KarenDianne]

You go girl! I agree - I know my body far better than my doctor and I've self-diagnosed many, many times...correctly. I'm still struggling with the beginning stages of all this and it's trial and error - some good days, some bad. But I believe at least that I know finally it IS celiac disease - the diet works! My doctor didn't even want to do the tests...she said they're inconclusive and if the diet is working...continue on it! Maybe there more to it than just being gluten-free but I take it one day at a time. But - the bottom line is...trust yourself and your symptoms and the treatments that work for you. Stay online and take the advice of the people who live it. Good luck! KarenDianne

Hi - I also have that darn pain in my side and up under my ribs...sometimes it's really difficult...painful. I do think the reflux idea is valid and I also believe it's trapped gas from our diets (or lack of) and trapped air...sometimes Gas-X will help me - other times nothing helps...except eating mashed potatoes. Honestly, when I have this pain, I often cook mashed potatoes and it really does seem to help. Sounds dumb but it works for me. Another thing I do...maybe psychological...maybe not...I hold a heating pad on my stomach. It actually does work. Hope this helps. Take care - KarenDianne

[whattodo]

Chris E,

I am also in the uk, sunny blackburn. I have all the tests done under the sun and have still not been diagnosed with anything. My latest results have shown inflamation of my duodenum which i have no idea what else it could be. I would suggest registering with celiac uk to get the pack that they send out. It is very useful and dont know what i would do without it. I did get mine for free even though i have not yet been advised.

I fully understand your frustration in the uk nhs, i have been back and forth to the docs and hospitals for 9 months now, and no result yet. Very frustrating.

If you need to know anything about food and like, just post your questions here. Nikki-uk is very helpful in uk based stuff.

Thanks

Jay

[Chris E]

Chris E,

I am also in the uk, sunny blackburn. I have all the tests done under the sun and have still not been diagnosed with anything. My latest results have shown inflamation of my duodenum which i have no idea what else it could be. I would suggest registering with celiac uk to get the pack that they send out. It is very useful and dont know what i would do without it. I did get mine for free even though i have not yet been advised.

I fully understand your frustration in the uk nhs, i have been back and forth to the docs and hospitals for 9 months now, and no result yet. Very frustrating.

If you need to know anything about food and like, just post your questions here. Nikki-uk is very helpful in uk based stuff.

Thanks

Jay

Hi Jay,

I'm from Newcastle. Thanks for that and yeah i have found Nikki-uk to be extrememly helpful to me. I'm no expert but from what i have read i would say that inflammation in the duodenum would be celiac. I think you should just keep pushing those doctors until you get an official diagnosis. I'm so fed up with them, but i'm still pushing. I'm seeing a new GI at the end of June and wil hopefully get somehere then. The most annoying thing is when you keep going back to see your GP and they come out with 'IBS, Depression, Chronic fatigue syndrome, it's all in the mind. Hav eyou experieced this with the NHS? So annoying, but i know there is something up and it seems really like celiac and so i am going to keep pushing.

This board has been great for me and the fact that thee is something out there that can help explain my symptoms has prevented me from going extremely mad....... I'm only 20 and really should not be like this.

Hope you get somehere soon with all of your problems. What are you main symptoms?????

Chris

[NY547]

I can't really say I'm fed up...if there is nothing there to find, then the docs have no other alternative than to suggest depression. My daughter "crashed" again 2 weeks ago. Severe fatigue, headaches, etc. They ran all the usual blood work again. Nothing definitive. They offered to do sleep testing. By the time the nurse called me with the results, I had already put my daughter on the gluten-free diet. With finals coming up she couldn't afford to miss anymore school. Her doctor is still leaning towards depression and wants her to see a counselor.

Within 2 days she was better, now she is the picture of health. Laughing, chatty, NOT sleepy, no more arms and legs like dead weights, no more pain.

If she eats gluten this weekend, has she been off it long enough to show a reaction? I've read where it's best to stay off it for up tp 3 months before reintroducing it. This weekend she might be in a situation where she can not avoid eating it without a big "to do".

Chris, please let us know what the new GI has to say. Good luck!

[whattodo]

Hi Jay,

I'm from Newcastle. Thanks for that and yeah i have found Nikki-uk to be extrememly helpful to me. I'm no expert but from what i have read i would say that inflammation in the duodenum would be celiac. I think you should just keep pushing those doctors until you get an official diagnosis. I'm so fed up with them, but i'm still pushing. I'm seeing a new GI at the end of June and wil hopefully get somehere then. The most annoying thing is when you keep going back to see your GP and they come out with 'IBS, Depression, Chronic fatigue syndrome, it's all in the mind. Hav eyou experieced this with the NHS? So annoying, but i know there is something up and it seems really like celiac and so i am going to keep pushing.

This board has been great for me and the fact that thee is something out there that can help explain my symptoms has prevented me from going extremely mad....... I'm only 20 and really should not be like this.

Hope you get somehere soon with all of your problems. What are you main symptoms?????

Chris

Hi Chris,

The pain I have is in the exact same place as you describe. It is just under the top left rib. I have had it for about 9 months now. I have had all the blood tests done and they were fine.

I had a ct scan of my stomach and a couple of cameras down the throat. The first of all thought i had a ulser of the stomach but after the biopsy they found i only had helical bacter pylori which is a bad bacteria. These do cause ulsers in the long term. i had the medication for this which should have cleared them up.

After the pain did not persist i went back to the doctor and told him that something was still wrong, i had a ct scan and that revealed i had diverticular disease. This is a disease of the bowel. On being on anti-spasmodic drugs for a while and the pain did not go away so i went back to the doctor again and told him that i researched diverticular disease and that it was not the pain i was experiencing. The doctor agreed. The doctor then sent me to get a biopsy of my stomach and one of my duodenum tube. The one of the stomach they forgot to do (which was for helical bacter pylori) and the second was for celiac disease. Whilst they did the biopsy they noticed that my duodenal tube had flattened mucosa and was inflammed. The biopsy came back negative for celiac?? I believe this was because i was not eating gluten long enough before the biopsy. Anyway they now know that there is a problem in my duodenal tube and just need to find out what is causing the problem. My doctor still thinks that it is celiac disease, but has also suggested helical bacter pylori or a problem with my gall bladder excreeting too much bile. Once i have the final 2 tests done then the doctor said it can only be celiac disease, so i will end up being one of those people never to be diagnosed.

I have now lost 28 pounds in 9 months and feel like im wasting away. I have been seeing a dietician but i know what to eat and not so she is not much help.

just to let you know if you still have the pain try eating mash potatoes as suggested above. I at some on friday and saturday my stomach was fine until my evening meal. On Saturday i at mash again and on sunday my stomach was fine. I have posted this on the forum and a few people have said its because potatoes has a healing quality on the small intestines. it is worth a try chris and see if this helps with your gluten free meals.

have you heard anything back for the doctors about what you have, it seems like we have very similar symptoms and hopefully once one gets diagnosed it will help the other. I will keep you informed on things that may help during the healing process.

Regards

Jason

[Chris E]

I eat a lot of mash potato anyway so that can only be a good thing maybe. Though i'm not on a gluten free diet yet, still just going as 'normal' as i possibly can. I don't see a GI doc until the 29th (remember this is the UK NHS we are going with - always going to wait at least a month). I just hope this guy is better than the last guy who said that there was nothing wrong with me.

Hopefully we can help each other once one of us has got somewhere with our doctors. Do you get any other symptoms other than the pain in your stomach area? How about neurological symptoms? Pins and needles in the hnds and feet? Bone and joint pain? I experience such pain and tiredness regularly..... so annoying.

Chris

Hi Chris,

The pain I have is in the exact same place as you describe. It is just under the top left rib. I have had it for about 9 months now. I have had all the blood tests done and they were fine.

I had a ct scan of my stomach and a couple of cameras down the throat. The first of all thought i had a ulser of the stomach but after the biopsy they found i only had helical bacter pylori which is a bad bacteria. These do cause ulsers in the long term. i had the medication for this which should have cleared them up.

After the pain did not persist i went back to the doctor and told him that something was still wrong, i had a ct scan and that revealed i had diverticular disease. This is a disease of the bowel. On being on anti-spasmodic drugs for a while and the pain did not go away so i went back to the doctor again and told him that i researched diverticular disease and that it was not the pain i was experiencing. The doctor agreed. The doctor then sent me to get a biopsy of my stomach and one of my duodenum tube. The one of the stomach they forgot to do (which was for helical bacter pylori) and the second was for celiac disease. Whilst they did the biopsy they noticed that my duodenal tube had flattened mucosa and was inflammed. The biopsy came back negative for celiac?? I believe this was because i was not eating gluten long enough before the biopsy. Anyway they now know that there is a problem in my duodenal tube and just need to find out what is causing the problem. My doctor still thinks that it is celiac disease, but has also suggested helical bacter pylori or a problem with my gall bladder excreeting too much bile. Once i have the final 2 tests done then the doctor said it can only be celiac disease, so i will end up being one of those people never to be diagnosed.

I have now lost 28 pounds in 9 months and feel like im wasting away. I have been seeing a dietician but i know what to eat and not so she is not much help.

just to let you know if you still have the pain try eating mash potatoes as suggested above. I at some on friday and saturday my stomach was fine until my evening meal. On Saturday i at mash again and on sunday my stomach was fine. I have posted this on the forum and a few people have said its because potatoes has a healing quality on the small intestines. it is worth a try chris and see if this helps with your gluten free meals.

have you heard anything back for the doctors about what you have, it seems like we have very similar symptoms and hopefully once one gets diagnosed it will help the other. I will keep you informed on things that may help during the healing process.

Regards

Jason

[whattodo]

I eat a lot of mash potato anyway so that can only be a good thing maybe. Though i'm not on a gluten free diet yet, still just going as 'normal' as i possibly can. I don't see a GI doc until the 29th (remember this is the UK NHS we are going with - always going to wait at least a month). I just hope this guy is better than the last guy who said that there was nothing wrong with me.

Hopefully we can help each other once one of us has got somewhere with our doctors. Do you get any other symptoms other than the pain in your stomach area? How about neurological symptoms? Pins and needles in the hnds and feet? Bone and joint pain? I experience such pain and tiredness regularly..... so annoying.

Chris

Tell me about it, the NHS is such a waste of time, like i said i had to wait 9 months and still not got an answer. Hopefully it wont be long now they found a starting point.

My symptoms are:

Sore upper left stomach (under left rib, like a balloon is there)"

Numb Face*

Pins and Needles only in bed in my arms ( they dont go numb tho)*

Brain Fog (Feeling that i am drunk and dizzy)$

Really slow hands (reactions)$

Sore thumb joint (This is the only sore joint really)*

Loss of alot of weight*

The symptoms I have marked " are constant

The symptoms I have marked * are on and off

The symptoms I have marked $ i dont have anymore

Chris are you eating gluten for the tests they need to run? Are you taking any extra source of multivitamins or calcium?

I only experience brain fog (which i presume you are refering to as neurological) once or twice after being on the slightly off the gluten. I didnt get this when i was completely on gluten but just seemed to come when avoiding it slightly but not completely. Like when i had a beer for example. i dont get it anymore now i am completely free. I have been free for month now, and feel like my intestines are starting to heal. Regarding my numb face i put that down to lack of vit B aswell as my pins and needles. I do take calcium and magnesium for my bones just till my stomach heals completely enought to absorb it all from my food. The weight loss is a big one for me. I used to be a body builder and now its like i have wasted away. Once you heal the intestines you will gain weight again apparently, i cannot wait. I still go to the gym 5 times a week and do alot of cardio work which helps my stomach feel better, it also helps making you go regular. Do you do any exercise?T

he food you are eating now, do you have alot of fibre, just asking because i used to and this made me really bloated and felt like the mentioned area of the stomach was going to tear open.

You also mentioned being tired alot, try doing some exercise help give you more energy.

Jay

[Nancym]

Hi Nikki,

Thank you! Like i say it is the people on here who are keeping me sane. I have lost all trust i used to have in doctors. Further questions though..... how can celiac cause pain in the rib cage area including behind the brest bone, under arm, shoulder, back etc? I know how it can cause stomach problems and that vitamin def can cause the bone pain, tingling etc? Any idea anyone? Also how does the UK gluten free prescription work?

Thanks in advance

Chris

Well, a couple of ways. First pain can be referred, so it might be coming from another source but because of how nerves are laid out it can show up there. Another thought is osteoperosis, if you're not absorbing calcium and vitamin D from food. Lastly, celiac disease can injure the brain and nerves (B12 deficiency and brain lesions). And finally, you could have an autoimmune disease, probably caused by the celiac.

Something like 33% of biopsy proven celiacs have negative blood tests. So insist on a biopsy.