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gatewaytobeing

Anyone Relate To "hoping You Have It"?

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Hi,

I just had a blood draw yesterday for the celiac panel suggested by a member here in my other post (list of 4 things). I find myself almost hoping I have celiac. When you have been through a lifetime of unexplained misery, it would be nice to have an explanation for "why" and also something to actually DO that would help for a change. I even hope my son has it too, if I have it. Maybe he can experience a dramatic improvement in his issues as well.

Anyone relate? I imagine I'm not alone in this.

I need to browse the boards more, but my next question is - once diagnosed and gluten free, did you notice a huge improvement right away? Big changes within the first few weeks and months? Anything that couldn't be reversed with the diet?

Was it night and day for you? Maybe I should post this under the post-diagnosis category.

Kath~*

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I did not know what Celiac Disease was until I was diagnosed. But, I thought I was dying of Cancer or something equally as grave.

Yes, I am grateful for Celiac and the knowledge that I have gained along with my good health.

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I was so glad to have an explanation. Sometimes you just want to know.

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Hi,

I just had a blood draw yesterday for the celiac panel suggested by a member here in my other post (list of 4 things). I find myself almost hoping I have celiac. When you have been through a lifetime of unexplained misery, it would be nice to have an explanation for "why" and also something to actually DO that would help for a change. I even hope my son has it too, if I have it. Maybe he can experience a dramatic improvement in his issues as well.

Anyone relate? I imagine I'm not alone in this.

I need to browse the boards more, but my next question is - once diagnosed and gluten free, did you notice a huge improvement right away? Big changes within the first few weeks and months? Anything that couldn't be reversed with the diet?

Was it night and day for you? Maybe I should post this under the post-diagnosis category.

Kath~*

Kath,

Yes, I can totally relate. After nearly 25 years of symptoms, to finally find out what to do to relieve them was HUGE! (I was just a little bitter about the fact that over the previous 15 years I had asked several doctors - including a GI specialist - about celiac disease and been rebuffed...but what's past is past.) I'm now working on educating people about the disease, so others don't have to go through what I went through.

Kate

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I had my blood test results returned two weeks ago and they were inconclusive. The doctor could not confirm or deny that I had celiac--even though my differential pointed to it, and since going gluten free I feel like a new person.

Regardless of the results, I would try the gluten free diet to determine any effect it may have on your symptoms. I have been gluten free for two months now and happier, healthier than ever.

Even though my blood tests were not conclusive, I am convinced I have a strong allergy or that the testing methods used are not developed enough to detect it in my system.

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Kath,

Yes, I can totally relate. After nearly 25 years of symptoms, to finally find out what to do to relieve them was HUGE! (I was just a little bitter about the fact that over the previous 15 years I had asked several doctors - including a GI specialist - about celiac disease and been rebuffed...but what's past is past.) I'm now working on educating people about the disease, so others don't have to go through what I went through.

Kate

One week on gluten free diet=major life changes. One week.

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After being called a hypocondriac my whole life by doctors and family, it is nice to know I am not one.

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I did not know what Celiac Disease was until I was diagnosed. But, I thought I was dying of Cancer or something equally as grave.

Yes, I am grateful for Celiac and the knowledge that I have gained along with my good health.

Yes, I know the feeling. And if I do not have celiac, I will still be searching for the cause. What were the biggest improvements for you (symptoms) within 1 month of going gluten-free? Anything you haven't yet been able to reverse?

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Kath,

Yes, I can totally relate. After nearly 25 years of symptoms, to finally find out what to do to relieve them was HUGE! (I was just a little bitter about the fact that over the previous 15 years I had asked several doctors - including a GI specialist - about celiac disease and been rebuffed...but what's past is past.) I'm now working on educating people about the disease, so others don't have to go through what I went through.

Kate

Hi Kate,

I hope I get to have that experience! It's so frustrating not having an answer and feeling like you can't take much more meanwhile going from dr. to dr. and coming up with nothing definitive.

What were your first and most noticeable improvements once going on the diet?

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One week on gluten free diet=major life changes. One week.

Care to expand on that?

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I had my blood test results returned two weeks ago and they were inconclusive. The doctor could not confirm or deny that I had celiac--even though my differential pointed to it, and since going gluten free I feel like a new person.

Regardless of the results, I would try the gluten free diet to determine any effect it may have on your symptoms. I have been gluten free for two months now and happier, healthier than ever.

Even though my blood tests were not conclusive, I am convinced I have a strong allergy or that the testing methods used are not developed enough to detect it in my system.

Hi, if this happens for me I will also try the gluten free diet. But until then, they say keep eating the gluten as stopping it will affect test results. Did you have the intestinal biopsy or the genetic testing? Or just the standard celiac blood panel?

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Hi, if this happens for me I will also try the gluten free diet. But until then, they say keep eating the gluten as stopping it will affect test results. Did you have the intestinal biopsy or the genetic testing? Or just the standard celiac blood panel?

if you are going to have the biopsy then keep eating gluten as stopping could affect the results.

genetic or stool testing don't require the consumption of gluten, however these tests do not diagnose celiac.

genetic testing tells you whether you have the genes associated with celiac or gluten intolerance but do not tell you if you have it (search the board for "genetic testing", there's tons of results and discussion)

stool testing may be able to tell you whether you are having a reaction to the consumption of gluten (search the board for "enterolab" for discussion, just be aware the discussions are quite....lively)

as for inconclusive results, if you feel better when you don't eat gluten then do the gluten-free diet, no doctor's permission is required ;)

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I am sure you are aware by now that celiac is hereditary. It can be a very hard thing to deal with not to mention a life style change. I went my whole life suffering with ibs. Till I was diagnosed with celiac of this year at 28. After being sick for 2 weeks and starting to figure it might not be the flu, but a food allergy(same kind of symptoms or similar when I found out I was lactose intolerant) I cut all wheat out of my diet and within one to two days...I was seeing a huge change in my body! I am blessed to have such a supportive family, but it may be hard to make such a life style change but after doing so it will be easier to manage.

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My most noticeable symptom that completely disappeared was my constant gas. It was becoming a HUGE problem and was keeping me from many social situations. Also, my stomach would immediately start making rumbling/gurgling noises after eating, as if it just wasn't being digested properly. The gas stopped within 2 days...it was that quick. It came back here and there because it took me awhile to become completely gluten free, but the first few weeks, I ate very plainly and it definitely made such a big difference. Also, the big D has pretty much gone away. There were days where I went to the bathroom 10 times. Now, I usually go 2 or 3 times, which I guess might still be a lot for some people, but in comparison to before it is okay (and now it is not D). I've heard that it takes longer for symptoms to subside in some people; I think it depends on the amount of damage to the intestines. I caught mine relatively early, only having mild damage/malabsorption/inflammation of my intenstines so my recovery was quick. Good luck to you!

Oh and also, yes!!! I agree, I wanted to be diagnosed with Celiac! I was disappointed when I wasn't at first. Too many of my symptoms matched up, and I had finally thought I had my answer and I'd start to feel human again. My diagnosis was delayed a bit but came after I have been gluten free for awhile (I got a second opinion on my endoscopy biopsy- so even if your biopsy comes back "negative", there is a possibility whoever looked at it read it wrong). My advice -- when your testing is done, go gluten free. You have nothing to lose!

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I started to feel better within days. I could eat without running for a bathroom. I wasn't having stomach pains. It was like WOW.... :D I stopped after my doc did a blood test which came back negative. I had done alot of reading and when we talked I told him I thought it was Celiac. He told me to try gluten free and I couldn't believe how much better I felt. I then had a horrible reaction. I think I have dermatitis hereptaformis. I have horrible dihydrotic exzema on my hands. My arms, legs, face, and chest break out too. My doc then referred me to a GI. He scheduled a endoscopy and colonoscopy 4 weeks later. The GI told me to go back to eating gluten until the test. I made it from that Tues. to Friday. I was so broke out and all the stomach issues were back full force. Both docs said stop the gluten and they would find what they find. I know that I am so much better off gluten and that is how I intend to stay.

Tonight as I prepare for my scopes tomorrow I am laughing... Everyone complains about the prep...This is how I have spent my life!!LOL LOL. :P I am so happy that no matter what they find or do not find I am staying gluten free. It is funny tonigt to think about how this used to be my life...

I am anxious to get the results to make sure there is no other damage to my intestines. I have found that in the last few weeks an "official diagnosis" is not as important as it once was to me. I just wish my skin issues would clear. From what I have read it can take 6mos to a year or more. At least I am on the right path... gotta go..

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Hi Kate,

I hope I get to have that experience! It's so frustrating not having an answer and feeling like you can't take much more meanwhile going from dr. to dr. and coming up with nothing definitive.

What were your first and most noticeable improvements once going on the diet?

The constant, painful diarrhea which had been the norm since middle school went away within a few weeks. I had my first consecutive solid bowel movements in over 20 years. (Not exactly an improvement, but I had to urinate more often because all that liquid wasn't exiting through my bowel anymore.) My chronic fatigue went away, as did the "arthritis" in my shoulders and hips. People started telling me how much better I looked, because I had previously always looked kind of grey and sickly. No more sores in my mouth. My nails now grow 2-3 times faster than they did before.

Kate

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My most noticeable symptom that completely disappeared was my constant gas. It was becoming a HUGE problem and was keeping me from many social situations.

OMG, the gas, I forgot about the gas! That was also a huge problem for me, but it started clearing up as soon as I went gluten-free.

Kate

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i have been gluten-free for about four months now and feel a million times better. for the first time since i was a kid i have energy to do things i want to do. within the next few weeks i'm going to eat something with gluten (trying to decide what though.... i want to make it count!) to prove whether i really am gluten intolerant. it would explain SO MANY things..... and it makes them hopeful, because if they are due to gluten intolerance then i have finally found the solution. after being ragged on by my parents my whole life for being lazy and forgetting things and being grounded for sleeping through my alarm (yes i've done that on account of staying up til 4 am, but most recently it was that uncontrollable sleep and fatigue) to have an ANSWER will make me feel so much better. i'm not incompetent, just sick. but now i am making myself better. yep. i'm hoping i have it. :)

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As I read everyone's posts, this makes me feel a little better. I have been living with discomfort for several years now and finally went to the doctor to demand they do something (in the past, they passed it off as stress, not eating correctly, etc.) I had the celiac blood test which came back negative. I had the endoscopy biopsy which ALSO came back negative for celiac, but the doctor told me I has intra epithelial lmphyocytosis, which is found as a precurser to celiac in some cases.

So, I'm trying the gluten free diet. I don't feel better yet, but am hoping to God that something changes. It got to the point where I was praying it would come back positive for celiac so I had an answer.

Has anyone else had a similar experience?

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As I read everyone's posts, this makes me feel a little better. I have been living with discomfort for several years now and finally went to the doctor to demand they do something (in the past, they passed it off as stress, not eating correctly, etc.) I had the celiac blood test which came back negative. I had the endoscopy biopsy which ALSO came back negative for celiac, but the doctor told me I has intra epithelial lmphyocytosis, which is found as a precurser to celiac in some cases.

So, I'm trying the gluten free diet. I don't feel better yet, but am hoping to God that something changes. It got to the point where I was praying it would come back positive for celiac so I had an answer.

Has anyone else had a similar experience?

i think there's a chance you could have it anyway, even though the tests came back negative. perhaps you don't have celiac's but still have a gluten intolerance. at any rate, keep at the gluten-free diet, there's a good chance it could end up helping you a lot! sometimes it takes a bit before you notice a difference. how long have you been gluten-free?

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That's the tough thing-every time I think I'm gluten-free, I find something else that I'm eating that actually isn't gluten-free. I believe only two days or so, but am starting to worry that I don't have it and I'm wasting my time.

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Yes. I was so happy to find out I had Celiac that I cried. I had been searching for an answer for years and every time I thought I knew what it was, it wouldn't be it. I was so happy to have an answer and a way to make myself feel better.

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