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redsidekick

One Year In

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It was about a year ago I was dxd with celiac. Over the past year I found great encouragement in reading posts that described symptoms and pains. I thank everyone who was willing to post their travails. It would calm me down when I realized the things I was experiencing was normal for some celiacs (I was not one of the ones who felt better than they ever felt within weeks of going gluten-free).

I went through a lot of pain for the first months after going gluten-free. If this is the same for you, the best thing to do is look back month to month, not day to day. When I did this my frustrations of how I felt would diminish because although I was hurting, it wasn't as bad as the month before. I have to admit part of posting this is therapeutic for me as I see how far I have come in the past year.

So, here is my history.

Summer 06- Stabbing pains in intestines when I ate. Lost about 10 months in one month. Dr. thought is was lactose intolerance, went off milk products, recovered quickly.

07-09- Bloating almost any night after I ate pizza for dinner.

Dec. 08- One night I ate pizza and had ice cream for dinner. That night woke up with TREMENDOUS cramps (felt like a blockage and should have went to hospital). Rest of the month my intestines felt "sore" anytime I ate.

Jan 09- Woke up one morning with bloating so bad I was nauseous. Intestine and abdominal pain everytime I ate. Was eating BRAT diet b/c of D I was having (increasing my bread intake, not good). Losing weight rapidly (altogether from Dec-Feb, 20 lbs). Went to ER due to pains and rapid heart beat (probably from anxiety b/c I thought I was dying). Everything I ate was going undigested out the other side. Almost fainted at work I was so weak.

Missed about 10 days of work in the month of Jan due to GI problems (this is from someone who averages 2 sick days a year). Difficulty sleeping.

At this point I was scared for my life. Went to doctor who thought it was IBS (probably to calm me down), but did blood test for Celiac and referred me to GI doctor.

Blood test came back slightly positive (forget test but 11 was my number with 10 being positive) for Celiac. GI doctor thought IBS but did endoscopy, looked OK, but biopsy came back mildly blunted villi.

Feb 09- Another blood test with the same result, officialy dxd with Celiac. After going gluten-free bowel movements began to normalize quickly, but pains remained in intestines and back. Only eating Rice Chex as I learn the ropes of what to eat.

Mar 09- Upper GI series reveals inflammation in terminal ileum, beginning to gain weight again. Still experiencing pain, still frustrated over what I can eat. A lot of anxiety about condition, difficulty sleeping.

Apr 09- Colonscopy with entrance into terminal ileum shows it is normal (yea!, 1st normal test in months!) Still in pain daily.

May 09- Pain is finally subsiding, more good days than bad. Better handle on what I could eat.

Aug 09- Best month in how I feel on a daily basis. Anxiety is subsiding, sleeping better.

Sept 09- Feb 10- Maybe once every 6-8 weeks I have pain or bloating episodes that last perhaps a week (glutening?) I have been religious about what I put in my mouth. Sleeping through the night, feeling like I did before all the issues began almost every day.

Anyway, hope that helps someone.

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It was about a year ago I was dxd with celiac. Over the past year I found great encouragement in reading posts that described symptoms and pains. I thank everyone who was willing to post their travails. It would calm me down when I realized the things I was experiencing was normal for some celiacs (I was not one of the ones who felt better than they ever felt within weeks of going gluten-free).

I went through a lot of pain for the first months after going gluten-free. If this is the same for you, the best thing to do is look back month to month, not day to day. When I did this my frustrations of how I felt would diminish because although I was hurting, it wasn't as bad as the month before. I have to admit part of posting this is therapeutic for me as I see how far I have come in the past year.

So, here is my history.

Summer 06- Stabbing pains in intestines when I ate. Lost about 10 months in one month. Dr. thought is was lactose intolerance, went off milk products, recovered quickly.

07-09- Bloating almost any night after I ate pizza for dinner.

Dec. 08- One night I ate pizza and had ice cream for dinner. That night woke up with TREMENDOUS cramps (felt like a blockage and should have went to hospital). Rest of the month my intestines felt "sore" anytime I ate.

Jan 09- Woke up one morning with bloating so bad I was nauseous. Intestine and abdominal pain everytime I ate. Was eating BRAT diet b/c of D I was having (increasing my bread intake, not good). Losing weight rapidly (altogether from Dec-Feb, 20 lbs). Went to ER due to pains and rapid heart beat (probably from anxiety b/c I thought I was dying). Everything I ate was going undigested out the other side. Almost fainted at work I was so weak.

Missed about 10 days of work in the month of Jan due to GI problems (this is from someone who averages 2 sick days a year). Difficulty sleeping.

At this point I was scared for my life. Went to doctor who thought it was IBS (probably to calm me down), but did blood test for Celiac and referred me to GI doctor.

Blood test came back slightly positive (forget test but 11 was my number with 10 being positive) for Celiac. GI doctor thought IBS but did endoscopy, looked OK, but biopsy came back mildly blunted villi.

Feb 09- Another blood test with the same result, officialy dxd with Celiac. After going gluten-free bowel movements began to normalize quickly, but pains remained in intestines and back. Only eating Rice Chex as I learn the ropes of what to eat.

Mar 09- Upper GI series reveals inflammation in terminal ileum, beginning to gain weight again. Still experiencing pain, still frustrated over what I can eat. A lot of anxiety about condition, difficulty sleeping.

Apr 09- Colonscopy with entrance into terminal ileum shows it is normal (yea!, 1st normal test in months!) Still in pain daily.

May 09- Pain is finally subsiding, more good days than bad. Better handle on what I could eat.

Aug 09- Best month in how I feel on a daily basis. Anxiety is subsiding, sleeping better.

Sept 09- Feb 10- Maybe once every 6-8 weeks I have pain or bloating episodes that last perhaps a week (glutening?) I have been religious about what I put in my mouth. Sleeping through the night, feeling like I did before all the issues began almost every day.

Anyway, hope that helps someone.

Thanks for sharing, I too have been having lots of pain in my stomach/intestines. My GI prescribed Dicyclomine when I saw him on Tuesday. He states that this is something that they use to treat IBS, but it may help with my pain until I am healed. So far I have taken it only at night, and I am at least able to sleep without being in pain. It can cause drowsiness(I haven't noticed that it does yet) so I have not tried it during the day yet but think that if I can handle it all week at night without being drowsy then I am going to try to take it more often so I am not in pain all day. It is so wonderful to know that it isn't just me!!!

Thanks again for sharing!!!

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yes your post absolutely helps ... just like you said being on here and posting and reading posts is *therapy*. i am truly hoping my insomnia subsides any night now and of course the other issues heal as well (its only been just over a month for me).

its great to hear that you are better ... another success story! :D

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Thank you! this was very helpful for me! I was lucky enought to have had a short "detox" period but the pain was so bad that i almost wished i was stabbed in the gut because it would feel better than the pain i was in! And without realizing it i actually detoxed myself twice. The first time i had no idea what was going on all i knew was that it was the worst stomach pain i had had in the then 7 years of this ordeal! after about a week it got better and to celebrate the fact that i could finally eat again i treated myself to MCDONALDS and started the battle over again without knowing what i was doing! The second time was after i was told i had celiac and that time it lasted a little longer and the pain was far worse! I went to the ER sunday and tuesday bacause i didnt even want to be in my own skin the pain was so bad! When i realized that i had been through this once before and i had finally solved the mystery of my worst "episode" i cried. I realized that if i had been more involved instead of just leaving it to doctors i may not have had to go through this for 8 years and i wouldnt have had to put myself through 2 horrible withdrawls! Im not glad by any means that any of us have to go through this but i am glad that there are people that can relate to how i am feeling and what i am going through!

*oh yeah the one thing i found that helped bring me at least some relief was a heating pad and hot showers. But im sure a lot of people figured that out by now! :)

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It was about a year ago I was dxd with celiac. Over the past year I found great encouragement in reading posts that described symptoms and pains. I thank everyone who was willing to post their travails. It would calm me down when I realized the things I was experiencing was normal for some celiacs (I was not one of the ones who felt better than they ever felt within weeks of going gluten-free).

I went through a lot of pain for the first months after going gluten-free. If this is the same for you, the best thing to do is look back month to month, not day to day. When I did this my frustrations of how I felt would diminish because although I was hurting, it wasn't as bad as the month before. I have to admit part of posting this is therapeutic for me as I see how far I have come in the past year.

So, here is my history.

Summer 06- Stabbing pains in intestines when I ate. Lost about 10 months in one month. Dr. thought is was lactose intolerance, went off milk products, recovered quickly.

07-09- Bloating almost any night after I ate pizza for dinner.

Dec. 08- One night I ate pizza and had ice cream for dinner. That night woke up with TREMENDOUS cramps (felt like a blockage and should have went to hospital). Rest of the month my intestines felt "sore" anytime I ate.

Jan 09- Woke up one morning with bloating so bad I was nauseous. Intestine and abdominal pain everytime I ate. Was eating BRAT diet b/c of D I was having (increasing my bread intake, not good). Losing weight rapidly (altogether from Dec-Feb, 20 lbs). Went to ER due to pains and rapid heart beat (probably from anxiety b/c I thought I was dying). Everything I ate was going undigested out the other side. Almost fainted at work I was so weak.

Missed about 10 days of work in the month of Jan due to GI problems (this is from someone who averages 2 sick days a year). Difficulty sleeping.

At this point I was scared for my life. Went to doctor who thought it was IBS (probably to calm me down), but did blood test for Celiac and referred me to GI doctor.

Blood test came back slightly positive (forget test but 11 was my number with 10 being positive) for Celiac. GI doctor thought IBS but did endoscopy, looked OK, but biopsy came back mildly blunted villi.

Feb 09- Another blood test with the same result, officialy dxd with Celiac. After going gluten-free bowel movements began to normalize quickly, but pains remained in intestines and back. Only eating Rice Chex as I learn the ropes of what to eat.

Mar 09- Upper GI series reveals inflammation in terminal ileum, beginning to gain weight again. Still experiencing pain, still frustrated over what I can eat. A lot of anxiety about condition, difficulty sleeping.

Apr 09- Colonscopy with entrance into terminal ileum shows it is normal (yea!, 1st normal test in months!) Still in pain daily.

May 09- Pain is finally subsiding, more good days than bad. Better handle on what I could eat.

Aug 09- Best month in how I feel on a daily basis. Anxiety is subsiding, sleeping better.

Sept 09- Feb 10- Maybe once every 6-8 weeks I have pain or bloating episodes that last perhaps a week (glutening?) I have been religious about what I put in my mouth. Sleeping through the night, feeling like I did before all the issues began almost every day.

Anyway, hope that helps someone.

Wow I feel like i was meant to read this today. I have been gluten free for about two weeks which I know is still early. However, I have been reading so manhy stories where people felt wonderful immediately. My GI symptoms -- specifically loose stool - have vanished, but I am still have cramping, bloating, stomach pain, and nausea after eating most of the time. Nothing I can't handle - but I was getting discouraged. I also have a moderate case of gastritis that is most likely contributing to the discomfort. Parts of your story are so similar to mine, especially your December - February account of what was happening. Pretty much exactly like my last 3 months! Thank you so much for sharing and congrats on hitting your one year! Wishing you many more years of good health as you continue on gluten-free.

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It was about a year ago I was dxd with celiac. Over the past year I found great encouragement in reading posts that described symptoms and pains. I thank everyone who was willing to post their travails. It would calm me down when I realized the things I was experiencing was normal for some celiacs (I was not one of the ones who felt better than they ever felt within weeks of going gluten-free).

I went through a lot of pain for the first months after going gluten-free. If this is the same for you, the best thing to do is look back month to month, not day to day. When I did this my frustrations of how I felt would diminish because although I was hurting, it wasn't as bad as the month before. I have to admit part of posting this is therapeutic for me as I see how far I have come in the past year.

So, here is my history.

Summer 06- Stabbing pains in intestines when I ate. Lost about 10 months in one month. Dr. thought is was lactose intolerance, went off milk products, recovered quickly.

07-09- Bloating almost any night after I ate pizza for dinner.

Dec. 08- One night I ate pizza and had ice cream for dinner. That night woke up with TREMENDOUS cramps (felt like a blockage and should have went to hospital). Rest of the month my intestines felt "sore" anytime I ate.

Jan 09- Woke up one morning with bloating so bad I was nauseous. Intestine and abdominal pain everytime I ate. Was eating BRAT diet b/c of D I was having (increasing my bread intake, not good). Losing weight rapidly (altogether from Dec-Feb, 20 lbs). Went to ER due to pains and rapid heart beat (probably from anxiety b/c I thought I was dying). Everything I ate was going undigested out the other side. Almost fainted at work I was so weak.

Missed about 10 days of work in the month of Jan due to GI problems (this is from someone who averages 2 sick days a year). Difficulty sleeping.

At this point I was scared for my life. Went to doctor who thought it was IBS (probably to calm me down), but did blood test for Celiac and referred me to GI doctor.

Blood test came back slightly positive (forget test but 11 was my number with 10 being positive) for Celiac. GI doctor thought IBS but did endoscopy, looked OK, but biopsy came back mildly blunted villi.

Feb 09- Another blood test with the same result, officialy dxd with Celiac. After going gluten-free bowel movements began to normalize quickly, but pains remained in intestines and back. Only eating Rice Chex as I learn the ropes of what to eat.

Mar 09- Upper GI series reveals inflammation in terminal ileum, beginning to gain weight again. Still experiencing pain, still frustrated over what I can eat. A lot of anxiety about condition, difficulty sleeping.

Apr 09- Colonscopy with entrance into terminal ileum shows it is normal (yea!, 1st normal test in months!) Still in pain daily.

May 09- Pain is finally subsiding, more good days than bad. Better handle on what I could eat.

Aug 09- Best month in how I feel on a daily basis. Anxiety is subsiding, sleeping better.

Sept 09- Feb 10- Maybe once every 6-8 weeks I have pain or bloating episodes that last perhaps a week (glutening?) I have been religious about what I put in my mouth. Sleeping through the night, feeling like I did before all the issues began almost every day.

Anyway, hope that helps someone.

Thank you! Thank you! Thank you! I had a really rough day today with cramping, gas, diarreah, fatigue, and body aches. I have no idea where or how I ate food that didn't agree with me since I cooked everything myself yesterday (the only think I can think of was the new to me sausage that said it was gluten-free) but I'm frustrated none-the-less. I got my Enterolab results back yesterday which disproved my Dr's assertion that "you don't have Celiac or an autoimmune disease!" I actually have DQ8 and DQ6 with elevated IGA and tissuetransglutaminase signifying active gluten immune response plus active Casein IGA. Pretty much sucks. But at least I know that I'm not crazy and that it's not all in my head. My trouble is that my intolerances don't end with gluten and milk. I've also had elevated blood responses to Egg, and Soy and dietary responses to Nightshades and yeast. My trouble is knowing if there is anything else that I'm sensitive to. I'm trying to keep my food journal religiously, but days like this make it tough, because I just can't seem to pinpoint where I screwed up. Also, my wife eats gluten containing foods and I don't know how strictly we need to segregate our kitchen, utensils, pots/pans, and cooking surfaces. I guess all I can say is I'm glad to know that I'm not nuts, but I'm still frustrated as hell and grieving the loss of so many foods that I used to love, even though I'm definitely looking forward to feeling better because I've felt so terrible for so long!

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Thank you so much for posting this. Like so many others that have posted, I am going through the same thing right now just beginning this diet. Although it is helping tremendously, I still have those days that are awful. This was perfect timing for this post because I had an episode a couple days ago and still haven't felt completely great since. This is really encouraging for me to know that other people are going through the same thing. Thank you!

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    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
    Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.  Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten
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