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A Post For Nathela

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This is a post from Nathela, who was having a little difficulty posting earlier, and asked for some help via PM:

Hi Everybody!

This is my first message as a new member of this wonderful forum. I had a celiac panel blood test done in last July, indicating an inconclusive result ( out of the igg, iga, ige and the rest, two of them were very high whereas the others were just above the normal line). Though, I did not have an endoscopy done in July. I think that I got scared with the situation. However, I started a gluten-free diet. I started to feel much better. But, some sharp pain was still bothering me on my left side. I went to see a Dietician who understood that my diet was still not perfect. She had me on a soluble fiber diet which CHANGED MY LIFE. Plus. no corn, no small grains like sesame seeds or anykind of seeds. After 10 years of struggle, I got a bellypain-free life! NO GAS!!

Now, I feel stronger and ready for my endoscopy scheduled for next month.

How was the experience of the endoscopy for you guys? Was it painful? I have to get back on a gluten diet to have the endoscopy done. Did it ever happen to one of you? Being gluten-free, and having to re-introduce gluten into your diet?

The other question I have, is about the recovery after the flu or a flu-like symptoms?

After I starded my gluten-free diet, I felt energetic and optimistic like ever, which confirmed to me the celiac disease diagnostic was right. I thought that all my efforts to eat right, were awarded. When I got the flu from my kid in last October, it took me 5 weeks to recover. I had to stay home for this period of time. I was so sick. My blood was not free of gluten yet. I felt so down. Not understanding why, after 3 months of gluten-free diet, I was having more difficulty than ever to recover from the flu (it usually took me 10 days before my celiac disease diagnostic)... I am afraid that if even I am fully 100% gluten-free, I will still not be able to cope well with the casual viruses, like flu. What is your opinion? Do you think it was because my blood was still contaminated, or is it a weak immune system condition that I will have to cope with all my life?

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Nathela--Hi and welcome! Glad you found us here. :) The endoscopy, for me , was no big deal at all. I was asleep for it, woke up feeling rested. You'll do fine with it, I'm sure. Sorry it took you so long to come back from the flu. 3 months gluten-free is a relatively short time. Most (like you) find some improvement after going gluten-free, but I didn't really begin to feel better until the 4th. month. I am almost 7 months into it, and I'm still healing. Definately better, but there's room for improvement! Your immune system and your body have been through a lot dealing with the gluten for a long time. It takes time to heal from that--the time varies greatly from person to person. Do you take vitamins? I find them helpful. Let us know how you do with your biopsy, and don't worry :D !

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Nathela- Hello and Welcome!

First off, I never did have to "re-introduce" gluten, that would be hard. But it can be done... I have had 3 endoscopies and they are really nothing to worry about. I never had any issues with mine--a slight sore throat after one of them, but that was it. The hardest part is not eating for a day ;)

I understand struggling with flus, illnesses etc. You are immune-compromised and before we make a full recovery we can be more suseptible to those things. I think you can be encouraged by the fact that it can take a while to make a full recovery. A Celiac nurse I work with says it can take up to two years to really feel 'normal' again. So know that recovery can take time, but that it is possible. And if you are vigilantly gluten-free--you should notice that progress and eventually build up some better 'resistance' to illnesses. To answer your last question, I have to ask--where you 100% gluten-free? If not, you can't expect improvement. And how long were you gluten-free? If it was only for a short period of time, you probably didn't get an accurate sense of what long term gluten-free would feel like, so to speak.

So are you having an endocsopy done in the future? And what exactly was your issue with nuts and seeds? Like diverticulitis? http://www.mayoclinic.com/health/diverticulitis/DS00070

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Nathela--Hi and welcome! Glad you found us here. :) The endoscopy, for me , was no big deal at all. I was asleep for it, woke up feeling rested. You'll do fine with it, I'm sure. Sorry it took you so long to come back from the flu. 3 months gluten-free is a relatively short time. Most (like you) find some improvement after going gluten-free, but I didn't really begin to feel better until the 4th. month. I am almost 7 months into it, and I'm still healing. Definately better, but there's room for improvement! Your immune system and your body have been through a lot dealing with the gluten for a long time. It takes time to heal from that--the time varies greatly from person to person. Do you take vitamins? I find them helpful. Let us know how you do with your biopsy, and don't worry :D !

:):) Thank you.

Well, I take vitamims: d, calcium, magnesium, c, e, zinc, b12, b6. Do I need any other supplement? What vitamin brand do you use?

I am still not sure of the reason why I have to re-introduce gluten to my diet for an endoscopy. My igg, and iga are still above normal. So why should I make myself sicker? Do you have any suggestions?

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(First a disclaimer for my insurance company- this is given as general medical information, not part of a doctor-patient relationship.)

Nathela,

You've asked some very good questions.

("I am still not sure of the reason why I have to re-introduce gluten to my diet for an endoscopy. My igg, and iga are still above normal. So why should I make myself sicker? " and "Why do I need an upper endoscopy?", aka Esophago-Gastro-Duodenoscopy, or EGD.)

The answers really depend on, "who wants to know, and why?"

You've noticed that you feel better off gluten. Hurray!! If I read you right, what YOU want is to feel well. (Duh!) What your GI wants to do is 'prove' you have celiac disease. Not at all the same thing.

First, some background. Celiac disease (celiac disease) is in the middle of a total upheaval in our understanding of the disease. It was originally recognised in young kids who started to lose weight, get sick, and even died after starting 'table foods'. That version is relatively rare, maybe 1/5000-20,000. That's the image/model most docs have of celiac in the US today.

Doctors, like other people, notice the most severe and dramatic 'presentation' of a disease first. In the 1950's Lupus was a VERY rare disease that turned your brain, and most of the rest of you, to jelly in a week. As time has gone by we've recognised milder and milder (and more common) versions, till now most people with lupus have minimal symptoms, and just a few lab abnormalities.

The same is very much true of Celiac disease in the US today. A few docs recognise that it's much more common (about 1/130) than we thought, but there hasn't been much recognition that that means we'll be seeing milder versions, too. With the most severe versions, you usually see abnormalities on small bowel biopsy. But you should know that only about 50% of sb biopsies (on people who have what we'd now recognise as celiac disease, based on lab results and symptoms) come out positive. One of the big questions right now is, "Who has celiac disease, and how do we tell?" A positive biopsy is a solid 'yes', but a negative biopsy is NOT a solid 'no'. Positive antibodies? Which ones? How about people who don't make the 'cutoffs' for the antibody test but still feel better off wheat? How about people who just feel better off wheat, test or no test? The problem is, nobody knows for sure, and if they say they do, they don't understand the problem.

Your GI may also say something about small bowel lymphoma (SBL) and the risk being greater in people with celiac disease, but that's from the time we thought celiac disease was rare (1/10,000). In the general population, small bowel lymphoma is a very rare disease. If 1/130 of the general population were at very high risk for SBL, we should be seeing a lot of it. We don't, so the risk for the garden variety person with celiac disease is low.

So the answer to your question about having the EGD and re-challenging on wheat depends on "Who wants to know, and why?". There's a principle in medicine that says, 'If the result of a test is not going to change your treatment, don't do the test!' Even if it's safe, any test has some slight risk, besides the time it takes (most of a day for an EGD, when you count recovery time) and some expense, not inconsiderable with an EGD.

The question I have for YOU is, if the EGD comes back 'negative', meaning the small bowel looks ok, are you going to go back to eating wheat?

WHAT, ARE YOU CRAZY??

You said it changed your life, you feel better, etc., etc.. It's really nice not being sick. So no matter what the test shows, you're going to stay off wheat, right? So why are you doing the test? "Confirming" you have celiac disease, and not just 'a sensitivity to wheat that makes you sick when you eat it', might make your GI happy, but it doesn't really make any difference to you, as far as I can see.

Your GI probably won't be happy with me, or maybe with you, but that's his problem. As a side note, docs get paid relatively little for talking to people and explaining things, and much much more for doing procedures, like the EGD. I'm not suggesting that that's his main motivation for doing the EGD, but it's worth keeping in mind. IMHO, if he won't take the time you need to answer your questions, you should find another GI.

(If, after you eliminate a whole bunch of foods, you feel better, you might want to try reintroducing them slowly one at a time to see if you have to stay away from all of them. Experts can make some general recommendations about foods, but the bottom line is,

"Does it bother YOU?")

I'm a family doc with a wheat 'sensitivity'. I haven't had a test; I feel better off wheat (it's so nice not to have your stomach hurt just a little bit, all the time). I just recently had an accidental exposure to wheat, and I won't be doing that again anytime soon, if I can help it.

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Guest nini

Dr. Peter... I agree with you FWIW! If you feel better off gluten, then stay off gluten, period... I never had the biopsy, but I KNOW I have celiac. My blood test levels were not only elevated, they were extremely high... In the almost 3 years now that I have been gluten free, I no longer have bloating and cramping from tummy pain, and no more D or C unless accidentally exposed to gluten, no more brain fog, no more depression or anxiety, blood pressure is down, I've lost almost 100 pounds without really trying! and no more heartburn! Why on earth would I ever want to put myself back on gluten just to have a biopsy done?

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(First a disclaimer for my insurance company- this is given as general medical information, not part of a doctor-patient relationship.)

Nathela,

You've asked some very good questions.

("I am still not sure of the reason why I have to re-introduce gluten to my diet for an endoscopy. My igg, and iga are still above normal. So why should I make myself sicker? " and "Why do I need an upper endoscopy?", aka Esophago-Gastro-Duodenoscopy, or EGD.)

The answers really depend on, "who wants to know, and why?"

You've noticed that you feel better off gluten. Hurray!! If I read you right, what YOU want is to feel well. (Duh!) What your GI wants to do is 'prove' you have celiac disease. Not at all the same thing.

First, some background. Celiac disease (celiac disease) is in the middle of a total upheaval in our understanding of the disease. It was originally recognised in young kids who started to lose weight, get sick, and even died after starting 'table foods'. That version is relatively rare, maybe 1/5000-20,000. That's the image/model most docs have of celiac in the US today.

Doctors, like other people, notice the most severe and dramatic 'presentation' of a disease first. In the 1950's Lupus was a VERY rare disease that turned your brain, and most of the rest of you, to jelly in a week. As time has gone by we've recognised milder and milder (and more common) versions, till now most people with lupus have minimal symptoms, and just a few lab abnormalities.

The same is very much true of Celiac disease in the US today. A few docs recognise that it's much more common (about 1/130) than we thought, but there hasn't been much recognition that that means we'll be seeing milder versions, too. With the most severe versions, you usually see abnormalities on small bowel biopsy. But you should know that only about 50% of sb biopsies (on people who have what we'd now recognise as celiac disease, based on lab results and symptoms) come out positive. One of the big questions right now is, "Who has celiac disease, and how do we tell?" A positive biopsy is a solid 'yes', but a negative biopsy is NOT a solid 'no'. Positive antibodies? Which ones? How about people who don't make the 'cutoffs' for the antibody test but still feel better off wheat? How about people who just feel better off wheat, test or no test? The problem is, nobody knows for sure, and if they say they do, they don't understand the problem.

Your GI may also say something about small bowel lymphoma (SBL) and the risk being greater in people with celiac disease, but that's from the time we thought celiac disease was rare (1/10,000). In the general population, small bowel lymphoma is a very rare disease. If 1/130 of the general population were at very high risk for SBL, we should be seeing a lot of it. We don't, so the risk for the garden variety person with celiac disease is low.

So the answer to your question about having the EGD and re-challenging on wheat depends on "Who wants to know, and why?". There's a principle in medicine that says, 'If the result of a test is not going to change your treatment, don't do the test!' Even if it's safe, any test has some slight risk, besides the time it takes (most of a day for an EGD, when you count recovery time) and some expense, not inconsiderable with an EGD.

The question I have for YOU is, if the EGD comes back 'negative', meaning the small bowel looks ok, are you going to go back to eating wheat?

WHAT, ARE YOU CRAZY??

You said it changed your life, you feel better, etc., etc.. It's really nice not being sick. So no matter what the test shows, you're going to stay off wheat, right? So why are you doing the test? "Confirming" you have celiac disease, and not just 'a sensitivity to wheat that makes you sick when you eat it', might make your GI happy, but it doesn't really make any difference to you, as far as I can see.

Your GI probably won't be happy with me, or maybe with you, but that's his problem. As a side note, docs get paid relatively little for talking to people and explaining things, and much much more for doing procedures, like the EGD. I'm not suggesting that that's his main motivation for doing the EGD, but it's worth keeping in mind. IMHO, if he won't take the time you need to answer your questions, you should find another GI.

(If, after you eliminate a whole bunch of foods, you feel better, you might want to try reintroducing them slowly one at a time to see if you have to stay away from all of them. Experts can make some general recommendations about foods, but the bottom line is,

"Does it bother YOU?")

I'm a family doc with a wheat 'sensitivity'. I haven't had a test; I feel better off wheat (it's so nice not to have your stomach hurt just a little bit, all the time). I just recently had an accidental exposure to wheat, and I won't be doing that again anytime soon, if I can help it.

:):) Thank you so much for the time you spent on my question. It relieved my husband and I a great deal. We felt it was not right to go back to gluten but we were not sure of the consequences on my medical situation. So, now the question is for us: do I do an endoscopy for having a biopsy or not? I won't re-introduce gluten but knowing how my villis are doing, can be a good idea. What do you think? Do you know any GI in Los Angeles? Thank you again, you made a family be stronger.

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:):) Thank you so much for the time you spent on my question. It relieved my husband and I a great deal. We felt it was not right to go back to gluten but we were not sure of the consequences on my medical situation. So, now the question is for us: do I do an endoscopy for having a biopsy or not? I won't re-introduce gluten but knowing how my villis are doing, can be a good idea. What do you think? Do you know any GI in Los Angeles? Thank you again, you made a family be stronger.

about having the EGD-

Going back to first principles- 'If the result of a test is not going to change what you do, don't do the test.' Even if it's safe, any test has some isk, besides the time it takes (most of a day for an EGD, when you count recovery time) and some expense, not inconsiderable with an EGD. If the EGD comes back 'negative', meaning the small bowel looks ok, are you going to go back to eating wheat?

What will having the EGD do for you? If it's positive, congratulations, you have celiac disease. You already know you can't eat wheat. If it's negative, you get the booby prize. You may still have celiac disease, and you sure know you can't eat wheat, but the GI will say you don't have celiac disease, so there's no problem, there's nothing wrong with you, you can eat whatever you want, but it really wasn't a conclusive test because you didn't go back to eating wheat for the test. Are you going to believe him, or your gut?

I don't know any GI docs in LA, but there has to be someone out there who knows about celiac disease. Take a look on Pub-Med:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi

(put "celiac disease angeles" without the quotes in the search bar) and you'll get a list of scientific articles mostly about celiac disease by docs in LA. Many of the articles have the authors email addresses. Good luck!

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Guest BERNESES

Dr. Liepmann- Thank you so much for what you said. It has helped ALL of us. After my bloodwork came back weak positive, I went gluten-free and I improved quite a bit. But the first GI I saw didn't believe in Celiac and scared the s*%t! out of me by testing me for EVERYTHING (HIV, cancer etc) but Celiac's. Found nothing except gallstones.

Second GI I saw believed in Celiac's but since i had been gluten-free at the time for 2 months had me do the gluten challenge (14 days, I made it through 10 and quit). He told me pre-biopsy that since I had been gluten-free the biopsy would most likely come back fine and we would consider me gluten intolerant for records purposes. as I was waking up from the anesthesia he came in and told me my villi were fine. So i said, "then we're just going to consider me gluten-intolerant, right?" He said no- if you were gluten intolerant there would be some damage. I asked him why I had been so sick for the ten days I ate gluten. He said, "Mind over matter" and walked out the door.

I agree- if you don't need the test, don't do it. But, if you need the confirmation- which you may or may not get- then do it. Thanks Dr. Liepmann, Beverly

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