Newcomer

[super-sally888]

Hi,

I just found your forum and have some questions.

I had assumed for the past 5 years that I have IBS as a result of stress. Previous diagnosed with erosive gastritis and barrets, which I was doing nothing about. Anyway, I finally saw a gastro dr. last Saturday and he mentioned possibility of celiac. I have hypothyroid now.

Aside from tummy troubles: classic ibs type symptoms: diarrhoea with intermittent constipation and short periods of feeling ok, bloating, gas, nausea, reflux I have some other things going on. Could these possibly be due to celiac. Includes itching. Particularly terribly itchy feet, but now also itching particularly low back, and sometimes on my body (but no obvious rash). All sorts of miscellaneous aches and pains that don't have clinical signs (like low back - sacroiliac area pain - xray was no problem), aching hands and wrists (periodically), aching feet, muscle cramps in the feet.. Yeah, and I have issues with food - hard not to when eating is not comfortable.

I am really hoping that this is going to be positive - because I would be very happy to find out that this is not just me being a hypochondriac and having all these psychosomatic symptoms. At least then I would know what I am dealing with! And can do something concrete.

My friends now think I am nuts and are getting sick of me being unwell all the time. (I don't blame them! I don't really like living with myself at the moment!)

They are going to do endoscopy and colonscopy next Sat and will do biopsy to confirm diagnosis or not.

Oh by the way, has anyone had colonoscopy without anaesthesia (did endoscopy a few years ago without and it wasn't pleasant, but it was bearable). I don't want anaesthesia becuase 1. it is much more expensive, and 2. I don't have any companion and have to get there and back under my own steam. Any advice.

Sally

[Noel1965]

Hi,

I just found your forum and have some questions.

I had assumed for the past 5 years that I have IBS as a result of stress. Previous diagnosed with erosive gastritis and barrets, which I was doing nothing about. Anyway, I finally saw a gastro dr. last Saturday and he mentioned possibility of celiac. I have hypothyroid now.

Aside from tummy troubles: classic ibs type symptoms: diarrhoea with intermittent constipation and short periods of feeling ok, bloating, gas, nausea, reflux I have some other things going on. Could these possibly be due to celiac. Includes itching. Particularly terribly itchy feet, but now also itching particularly low back, and sometimes on my body (but no obvious rash). All sorts of miscellaneous aches and pains that don't have clinical signs (like low back - sacroiliac area pain - xray was no problem), aching hands and wrists (periodically), aching feet, muscle cramps in the feet.. Yeah, and I have issues with food - hard not to when eating is not comfortable.

I am really hoping that this is going to be positive - because I would be very happy to find out that this is not just me being a hypochondriac and having all these psychosomatic symptoms. At least then I would know what I am dealing with! And can do something concrete.

Hi Sally and Welcome! I am fairly new here too so don't know if I can help much but read, read and more read .....lots to be learned here. Based on your symptoms, celiac does sound like a possiblility. I know that I felt like I was a hypochondriac too until I got the diagnosis......which did help some. At least my family understands now. Hope all goes well for you with the endoscopy and colonoscopy....I am not sure what I was given for sedation. It was not anaesthetic.....I was not aware of what was happening and remembered nothing of it but I guess I was able to respond to requests etc. My experience with it was a piece of cake.....the fear ahead of the procedure was the worst part about it......try not to worry!

My friends now think I am nuts and are getting sick of me being unwell all the time. (I don't blame them! I don't really like living with myself at the moment!)

They are going to do endoscopy and colonscopy next Sat and will do biopsy to confirm diagnosis or not.

Oh by the way, has anyone had colonoscopy without anaesthesia (did endoscopy a few years ago without and it wasn't pleasant, but it was bearable). I don't want anaesthesia becuase 1. it is much more expensive, and 2. I don't have any companion and have to get there and back under my own steam. Any advice.

Sally

Hi Sally and Welcome! I am fairly new here too so don't know if I can help much but read, read and more read .....lots to be learned here. Based on your symptoms, celiac does sound like a possiblility. I know that I felt like I was a hypochondriac too until I got the diagnosis......which did help some. At least my family understands now. Hope all goes well for you with the endoscopy and colonoscopy....I am not sure what I was given for sedation. It was not anaesthetic.....I was not aware of what was happening and remembered nothing of it but I guess I was able to respond to requests etc. My experience with it was a piece of cake.....the fear ahead of the procedure was the worst part about it......try not to worry!

[lonewolf]

Welcome to the forum. It sounds like you've come to the right place. I don't know much about the itching, but all your other symptoms are pointing to Celiac/gluten intolerance. Please stick around and ask questions and let us know how your tests turn out.

[Guest cassidy]

Hope you have found the answer to your problems. Glad you found a doctor who is moving quickly. Please just remember that many of us have had negative blood tests and biopsies - they only catch about 50% of the cases. Maybe us negative people are gluten intolerant or don't have celiac yet, but we certainly have problems with gluten and are treated the same way - by going gluten-free.

If money is a huge issue you might try the diet for a few weeks and see how you feel. If you have a positive dietary response that is probably enough evidence that gluten is your problem.

If you go ahead with the biopsy and it comes back negative you should probably still try the diet. In the beginning I really wanted a positive diangosis so I could finally say what was causing my symptoms - everyone thought I was crazy - especially my husband who didn't trust my "internet diagnosis." Two weeks on the diet and I felt like a new person so I have no doubt now.

Hope you feel better soon and good luck with your tests.

[Budew]

Itching! Oh yes! It was driving me crazy. My dermatologist suggested just sticking with baby oil and vasoline to mosturize. Suave is gluten-free and helped too. But when I cut out white potao, it all stopped. I tested a few times and sure enough a slice of potato, potato flour in gluten-free products, even 4-5 potato chip bring on the itch. Often it is delayed reaction. I get itchy about 12 hours after eating them.

I am still working on the pain issue. I do the chiro & yoga but it has really become a problem. Like you xrays are fine. I have feelers out everywhere for suggestions on the pain. Please post if you have an idea.

Good Luck!

[par18]

Hope you have found the answer to your problems. Glad you found a doctor who is moving quickly. Please just remember that many of us have had negative blood tests and biopsies - they only catch about 50% of the cases. Maybe us negative people are gluten intolerant or don't have celiac yet, but we certainly have problems with gluten and are treated the same way - by going gluten-free.

If money is a huge issue you might try the diet for a few weeks and see how you feel. If you have a positive dietary response that is probably enough evidence that gluten is your problem.

If you go ahead with the biopsy and it comes back negative you should probably still try the diet. In the beginning I really wanted a positive diangosis so I could finally say what was causing my symptoms - everyone thought I was crazy - especially my husband who didn't trust my "internet diagnosis." Two weeks on the diet and I felt like a new person so I have no doubt now.

Hope you feel better soon and good luck with your tests.

Yes I would also suggest doing the diet regardless of the test results. Personally I would do the diet first and then do testing if the diet did "not" work. The nice thing about trying to diagnose this condition is the treatment does not cost any extra and it can possibly save some people money in the long run. If you do elect to try the diet first then make sure you exclude all chance of gluten and keep a food log. Give the diet an honest effort and if this is really what is wrong with you I expect you will see positive results. Good luck.

Tom

[jerseyangel]

Hi and welcome

A lot of your symptoms could indicate Celiac--I also get the itching when glutened. I had it before I went gluten-free, and it returns when I accidently ingest it. No rash or redness, just itching.

If you plan to go ahead with the testing, I would suggest not going gluten-free or even gluten lite until after the tests. Doing so could skew the result. Of course, if you decide not to go with the conventional testing, you could always try the diet and see how you do. A positive response to the gluten-free diet is in and of itself a valid diagnostic tool.

Best of luck!

[watkinson]

O boy! You sound very much like me!! I was kind of a sickly child, always getting every cold, flu, tonsilitis, strep throat, and virus that came my way. By Jr. high school I started having chronic lower back pain. High school started with chronic headaches, and aches in general. My first what I call "attack" happened when I was 17. Sudden horrible stomach pain, nausea, and liquid diareah. A couple years later the itchy rash started on my cheeks and neck. Not very noticible but stingy and itchy. Then small patches of exzema. Around 25 years old started extreme, crippling pain in my ankles. Then the wrists. About 8 years ago things got very bad physically for me. I was diagnosed Hypothyroid and weighed about 165 (size 12) had periferal nueropothy (numbness and tingling in the hands and feet), terrible fibromyalgia, restless leg syndrome, I'd wake up with charlie horses in my calves and covered in sweat, chronic bone and joint pain (to the point where certain joints felt like the bone was broken) sleeplessness (as little as 1 hour a night) chronic fatigue, depression, you name it. I was also living on antidiareah (as many as 4 or more a day) (probably one of the causes of the hypothyroid) I was also having stomach attacks 3 to 7 times a week lasting for several hours each time. The pain was so severe I would beg God to let me die! I went to specialist after specialist and none of them could figure it out!!!! I was tested for chrones, M.S., rheumatoid arthritis, exrays for regular arthritis, Lupus, Colon cancer, chronic lymes and was finally diagnosed with IBS, being told that they don't even know what that is, or the cause!! Just a name to put on unexplained digestive problems. I basically gave up and figured I would just be this way until I died.

UNTIL......I read an article saying that people with IBS seem to do better if they give up bread. I thought ....okay...I'll try anything. In one day it was remarkable, in 1 week it was like a miralce. I didn't know what it was, I thought that maybe I was allergic to yeast. I stopped taking antidiareahls because I no longer needed them. My thyroid levels came back up on thier own, I lost 40 pounds in 9 months, eating more, and of course not throwing it up. I weighed 120 pounds and wear a size 4 without trying!! I had only 6 attacks in those 9 months. the physical problems like achyness, PN, fibro, sleeplessness ect. hadn't changed because I didn't know about gluten, I only had given up bread. Then when talking to someone about my symptoms they told me about celiacs disease!! I looked it up on line and balled my eyes out. There in front of me was all my symptoms.

WOW!! I saw my doctor (AGAIN) told him what was going on, he sent me to a gastro doctor who did the blood test and the biopsy and sure enough...CELIACS!! That was 3 1/2 years ago. I still have mild symptoms of aches and fatigue, but pretty much everything is gone. I started running 3 years ago, and go 5 miles 3 times a week, something I never could have done before becasue of the pain.

Everything you said sounds like celiacs. Read some of the articles on this site about related diseases, you will be amazed at all of it.

If you give up gluten your blood tests and biopsy my be negative or inconclusive. You need to be eating gluten to make sure the tests are as acurate as possible. But I always say....who cares what the doctors say...look what they did to me all those years! If you go gluten free and feel better thats the only answer you need.

Wendy

[casnco]

Hi,

I just found your forum and have some questions.

I had assumed for the past 5 years that I have IBS as a result of stress. Previous diagnosed with erosive gastritis and barrets, which I was doing nothing about. Anyway, I finally saw a gastro dr. last Saturday and he mentioned possibility of celiac. I have hypothyroid now.

Aside from tummy troubles: classic ibs type symptoms: diarrhoea with intermittent constipation and short periods of feeling ok, bloating, gas, nausea, reflux I have some other things going on. Could these possibly be due to celiac. Includes itching. Particularly terribly itchy feet, but now also itching particularly low back, and sometimes on my body (but no obvious rash). All sorts of miscellaneous aches and pains that don't have clinical signs (like low back - sacroiliac area pain - xray was no problem), aching hands and wrists (periodically), aching feet, muscle cramps in the feet.. Yeah, and I have issues with food - hard not to when eating is not comfortable.

I am really hoping that this is going to be positive - because I would be very happy to find out that this is not just me being a hypochondriac and having all these psychosomatic symptoms. At least then I would know what I am dealing with! And can do something concrete.

My friends now think I am nuts and are getting sick of me being unwell all the time. (I don't blame them! I don't really like living with myself at the moment!)

They are going to do endoscopy and colonscopy next Sat and will do biopsy to confirm diagnosis or not.

Oh by the way, has anyone had colonoscopy without anaesthesia (did endoscopy a few years ago without and it wasn't pleasant, but it was bearable). I don't want anaesthesia becuase 1. it is much more expensive, and 2. I don't have any companion and have to get there and back under my own steam. Any advice.

Sally

First of all you are REALLY brave!!!! I would hire a someone to take me home afterwards rather than not have anaesthesia!!!!! You are a strong person.

I get the itching when I ingest gluten. Some people take Dapsone to relieve the symptoms. I just use diet and lots of anti-itch cream.

The other symptoms seem like they could be related but I have never experienced them. Good Luck!

[super-sally888]

HI everyone.

Wow! What a supportive forum. Thanks so much for all your responses.

Dr. insists I do endoscopy colonoscopy and biopsy to rule out other things. Like C. Particularly becuase I was diagnosed with barret's before (damage to oesophagus from reflux), and he wants to see what is actually happening. As much as I am not looking forward to this testing experience, I also think it is necessary.

Actually, normally I just eat a small amount of bread every day. lately have been eating a lot more pasta than usual... maybe that is why things suddenly got so bad the last few weeks, to the point it is really unbearable...

Am not doing low gluten this week prior to the test. Trying to finish up all the gluten products in my cupboard , because next week I will start the diet, regardless. Itching and spending lots of time on the toilet.

Am so hopeful that this is the answer and I am not going crazy!!! Fingers and toes crossed. I really would like a positive results.

S

[watkinson]

Remember....there is a very high falst negative in celiac testing. Even if your tests come out negative or inconclusive you should still try the diet. You may indeed be a celiac or maybe not a celiac but still gluten intollerant. Good luck on your tests. Wendy

[super-sally888]

Thanks Wendy.

I do intend to try gluten free regardless of results. It is definitely worth a try. I don't want to go on living like this. It is so uncomfortable.

Just confirmed with the Dr. for tomorrow. He is a really nice man. When I first saw him last week the first thing he did is introduce himself to me and then shake my hand. I feel like we could be partners in this... He gave me his cell phone no. and told me I could contact him any time if I had questions or problems..

Also he was very thorough in his questioning and he suggested celiac straight on up, not just saying IBS and must be due to stress (which was always my previous response from any dr I saw). Also explaining everything and making sure I knew what the medical terms we were using meant.

Trusting the Dr. is going to be a big part of this (regardless of what this is). He also told me he would need to take quite a number of biopsy (and that was before I saw that requirement on this board) - so I guess he is really knowledgeable and up-to-date. And he reassured me he is very experienced with endoscopy / colonoscopy and that he is comfortable to do the procedure without anaesthesia... In fact that it is better in terms of recovery..

BUT I am still really really really nervous. Having something stuck up one's A** and wiggling around in one's belly (a belly that is never very comfortable at the best of times) when one is fully aware of it is NOT going to be a nice experience. The endoscopy I am cool with. Been there, done that. Though the biospsies did hurt. But colonoscopy! Hmmmmm.....

Have been eating lots of wheat stuff all week. Have LBM and reflux all week (though not too bad!), though have been super itchy.. Maybe really don't have this... well.. will see.. diet challenge next. That will be much more of a challenge than getting through the tests!

At least living in Asia (Philippines) avoiding gluten may be a little easier (diets here revolve around rice, not wheat).

Will update tomorrow when am through with all the testing..

S

[casnco]

Thanks Wendy.

I do intend to try gluten free regardless of results. It is definitely worth a try. I don't want to go on living like this. It is so uncomfortable.

Just confirmed with the Dr. for tomorrow. He is a really nice man. When I first saw him last week the first thing he did is introduce himself to me and then shake my hand. I feel like we could be partners in this... He gave me his cell phone no. and told me I could contact him any time if I had questions or problems..

Also he was very thorough in his questioning and he suggested celiac straight on up, not just saying IBS and must be due to stress (which was always my previous response from any dr I saw). Also explaining everything and making sure I knew what the medical terms we were using meant.

Trusting the Dr. is going to be a big part of this (regardless of what this is). He also told me he would need to take quite a number of biopsy (and that was before I saw that requirement on this board) - so I guess he is really knowledgeable and up-to-date. And he reassured me he is very experienced with endoscopy / colonoscopy and that he is comfortable to do the procedure without anaesthesia... In fact that it is better in terms of recovery..

BUT I am still really really really nervous. Having something stuck up one's A** and wiggling around in one's belly (a belly that is never very comfortable at the best of times) when one is fully aware of it is NOT going to be a nice experience. The endoscopy I am cool with. Been there, done that. Though the biospsies did hurt. But colonoscopy! Hmmmmm.....

Have been eating lots of wheat stuff all week. Have LBM and reflux all week (though not too bad!), though have been super itchy.. Maybe really don't have this... well.. will see.. diet challenge next. That will be much more of a challenge than getting through the tests!

At least living in Asia (Philippines) avoiding gluten may be a little easier (diets here revolve around rice, not wheat).

Will update tomorrow when am through with all the testing..

S

Good Luck with your tests.

[watkinson]

Wow Sally, What a great doctor! What I wouldn't have done to have a doctor like that...you're very lucky!! When I had my colonoscopy and biopsy I was not put under. They gave me a shot that made me go to sleep but was awake again in less that half an hour. felt completely fine in a few hours after that. Maybe that is what your doctor will do. That way you don't have to be completely awake. Good luck with the tests, looking forward to seeing what happens when you do the diet, keep us up to date.

Wendy