Is It Something Other Than Celiac?

[Guest laferriere]

Hi!

After having many symptoms improve greatly or at least improve somewhat over the past 3 to 4 weeks, I feel I'm sliding back again and I'm so confused and frustrated! From what I've read I understand this can happen, but I REALLY don't think I've had any gluten; I prepare all my food myself from whole ingredients with the exception of Erewhon's gluten-free Crispy Brown Rice. I also am having no soy, dairy or egg. I've had two bad nights with the weird small intestine type bloat and feeling of strange gaseousness and some of that fun left-side pain as well. Because I had what was considered a "mild" positive ttg test- 28, (scale of normal range:0-19), and a negative biopsy, (after actually close to 4 weeks gluten-free with the exception of 4 days in there in the middle), I can't help wondering if some other thing is going on or if I just need to be VERY patient. Like the rest of you! One thing I've read a little about is "systemic candidiasis". Many symptoms seem similar to celiac, although the celiac description more accurately seems to define my symptoms. I suppose with all the imbalances things could be out of whack with good and bad bacteria as well. I have taken probiotics, however, for about 3 years, stopped in the last 5 montyhs while trying to find one gluten-free. (just did) Does anyone know anything about any of these things? I'm sorry to go on and on but I also don't know when I should think maybe it's not celiac. I have read an elevated anti-tissue transglutiminase test can also show up in Crohn's and Inflammatory Bowel Disease, but where I've just had an upper endoscopy and biopsy, also a colonoscopy, I think they would have seen that. Also, I have more trouble with constipation than extreme diarrhea so I don't THINK I have those two things. I am considering the Enterolab testing just to see how to proceed and to question the biopsy. Thank you ahead of time to anyone who reads this whining mess! May everyone feel much better soon!

lisa

[Kaycee]

Hi!

After having many symptoms improve greatly or at least improve somewhat over the past 3 to 4 weeks, I feel I'm sliding back again and I'm so confused and frustrated! From what I've read I understand this can happen, but I REALLY don't think I've had any gluten; I prepare all my food myself from whole ingredients with the exception of Erewhon's gluten-free Crispy Brown Rice. I also am having no soy, dairy or egg. I've had two bad nights with the weird small intestine type bloat and feeling of strange gaseousness and some of that fun left-side pain as well. Because I had what was considered a "mild" positive ttg test- 28, (scale of normal range:0-19), and a negative biopsy, (after actually close to 4 weeks gluten-free with the exception of 4 days in there in the middle), I can't help wondering if some other thing is going on or if I just need to be VERY patient. Like the rest of you! One thing I've read a little about is "systemic candidiasis". Many symptoms seem similar to celiac, although the celiac description more accurately seems to define my symptoms. I suppose with all the imbalances things could be out of whack with good and bad bacteria as well. I have taken probiotics, however, for about 3 years, stopped in the last 5 montyhs while trying to find one gluten-free. (just did) Does anyone know anything about any of these things? I'm sorry to go on and on but I also don't know when I should think maybe it's not celiac. I have read an elevated anti-tissue transglutiminase test can also show up in Crohn's and Inflammatory Bowel Disease, but where I've just had an upper endoscopy and biopsy, also a colonoscopy, I think they would have seen that. Also, I have more trouble with constipation than extreme diarrhea so I don't THINK I have those two things. I am considering the Enterolab testing just to see how to proceed and to question the biopsy. Thank you ahead of time to anyone who reads this whining mess! May everyone feel much better soon!

lisa

I am a newbie too, well it is getting on 6 months gluten free.

At first it went with a hiss and a roar with improvements to my diahrea, and a few other improvements that I did not even consider would happen.

Well to cup a long story short, I sort of relapsed again too. Maybe at first, the worst of the gluten had been eliminated and the body thought, wow, this is good!. But I think in my case, there was still a little bit of gluten getting in where I least thought it would be. The doctor said it takes time for your body to come right. I knew it was getting in because of the reactions I was having. So the little bit was probably accumulating, and my body was probably thinking, hey there is still some gluten being ingested, so it still performed.

I have got to the stage where I prepare all my own food, like you. I don't buy any diet drinks, they play merry havoc on me. I don't buy any gluten free treats because of the fat content etc, and probably mainly because they are still laced with additives. This week the only extras have been cadbury chocolate, sprite lemonade and a bit of gin last night. I feel fine. Actually have not had any diahrea or stomach pains for about three days, and that for me is real progress. To start with the diahrea disappeared, but to come back so that it was nearly as bad as before. So I pulled myself up, I write down everything I eat, and any reactions, and keep a check on my loo habits. To me it now looks like I have turned the corner, enough to consider loosing that extra two stone that I had put off loosing till I had at least come to terms with coeliac, Glad to say I had lost two stone in the previous year before diagnosis and have not put any back on, but it is now time to try again.

I have gone right of additives, I still have a few, but nowhere near as many, so convenience food is right out the door.

I am feeling much better, and have nearly got rid of the diahroa. I don't know if all the processed food disagrees with coeliac or not, but I just prefer to be processed free, I now like to know what I am eating and I am feeling better for it.

Hope this helps, as I know it can be hell those first frew months. At times it felt like I was eliminating all foods one by one, because it felt like nothing agreed with me. But what I am left with is yummy and not boring and I can live on it, because in the end it makes me feel fine.

Don't forget to check your make up and shampoos for gluten.

Cathy

[egardner]

I can only speak to my experiences. I improved rapidly over the first month after I was diagnosed. I occasionaly have small relapses when I am "gluttened" or during times of serious stress. (some of my symptoms will reappear without a known gluten ingestion) I have a friend with celiac for whom it took almost a year for her to be completley asymptomatic, and she knew she was not having a gluten ingestion issue. I think for some people it takes a long time, depending on a lot of other things, like age, other health problems, etc. I do know that Chron's is a pretty specfic testing process, and a colonscopy should definitly show the indicators. I hope you improve again, and I know how frustrating it can be. Good luck!

[Guest laferriere]

I am a newbie too, well it is getting on 6 months gluten free.

At first it went with a hiss and a roar with improvements to my diahrea, and a few other improvements that I did not even consider would happen.

Well to cup a long story short, I sort of relapsed again too. Maybe at first, the worst of the gluten had been eliminated and the body thought, wow, this is good!. But I think in my case, there was still a little bit of gluten getting in where I least thought it would be. The doctor said it takes time for your body to come right. I knew it was getting in because of the reactions I was having. So the little bit was probably accumulating, and my body was probably thinking, hey there is still some gluten being ingested, so it still performed.

I have got to the stage where I prepare all my own food, like you. I don't buy any diet drinks, they play merry havoc on me. I don't buy any gluten free treats because of the fat content etc, and probably mainly because they are still laced with additives. This week the only extras have been cadbury chocolate, sprite lemonade and a bit of gin last night. I feel fine. Actually have not had any diahrea or stomach pains for about three days, and that for me is real progress. To start with the diahrea disappeared, but to come back so that it was nearly as bad as before. So I pulled myself up, I write down everything I eat, and any reactions, and keep a check on my loo habits. To me it now looks like I have turned the corner, enough to consider loosing that extra two stone that I had put off loosing till I had at least come to terms with coeliac, Glad to say I had lost two stone in the previous year before diagnosis and have not put any back on, but it is now time to try again.

I have gone right of additives, I still have a few, but nowhere near as many, so convenience food is right out the door.

I am feeling much better, and have nearly got rid of the diahroa. I don't know if all the processed food disagrees with coeliac or not, but I just prefer to be processed free, I now like to know what I am eating and I am feeling better for it.

Hope this helps, as I know it can be hell those first frew months. At times it felt like I was eliminating all foods one by one, because it felt like nothing agreed with me. But what I am left with is yummy and not boring and I can live on it, because in the end it makes me feel fine.

Don't forget to check your make up and shampoos for gluten.

Cathy

Cathy,

Thank you so much for your encouragement. I have never been much of a "convenience" food-eater; I've always had pretty healthy food and I don't like soda at all. I do like a glass of white wine with dinner, in fact I think it's helpful. (I THINK) Stress never seems to help this situation and I have had a bit lately. I wish I could find a dark chocolate bar WITHOUT gluten AND without soy lecithin or dairy! Good luck to you and I thank you again. I'm trying to hang in there. I don't intend to go on gluten again anyway. New Zealand looks so beautiful; you must love living there.

lisa

I can only speak to my experiences. I improved rapidly over the first month after I was diagnosed. I occasionaly have small relapses when I am "gluttened" or during times of serious stress. (some of my symptoms will reappear without a known gluten ingestion) I have a friend with celiac for whom it took almost a year for her to be completley asymptomatic, and she knew she was not having a gluten ingestion issue. I think for some people it takes a long time, depending on a lot of other things, like age, other health problems, etc. I do know that Chron's is a pretty specfic testing process, and a colonscopy should definitly show the indicators. I hope you improve again, and I know how frustrating it can be. Good luck!

Elizabeth

Thank you; it is nice to know I'm not alone, so this board is so great. It is frustrating to think you haven't ingested gluten yet still feel bad. I will hang in there and think of all of you, too!