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  1. Hello everybody!

    Last July, I had a positive blood test for Ceilac(Igg, Iga).

    After 10 years of struggle with my health, I finally got an answer.

    I went gluten-free and followed the "Specaific Carbohydrate Diet"( by Elaine Gottschale, everybody should read her, her experience saved me so much life, thanks to her, I've become belly pain free).

    I had "celiac attacks" for another 8 months. They are a mix of extreme exhaustion with brain fog, like if I have an unbearable weight on my chest.

    The gluten-free diet has changed a lot for me. But, I have not found a normal life yet. Stress is like the main factor of my attacks. Sometimes, I know that I have been contaminated. Though, I am not sure from where.

    I still get sick with flu or flu-like virus, very easily.

    The revolution, is that I have no more depressive thoughts. Depression is OUT of my life. I am a new spirit. Or, lets say that I found back my spirit. It feels GOOD. Thank you my GI, thank you God. Or vice versa? Who Knows? :D

    Last month, I did a genetic blood test. It came back NEGATIVE!

    And, my mother did hers, it came back POSITIVE!

    My questions are:

    -is there any of you who has been having a similar recovery? The stress factor still bugs me.

    -how do you explain the fact that I have the symptoms of ceilac without the gene and my mother has no symptoms with having the gene?

    -do you think that there might be another gene unrevealed yet?

    Thank you so much for your insight, lots of hugs and smiles for everybody, Nathela. :P

  2. Hi Girls!

    I am paranoid with make-up... Since I have been told that I am ceilac, I've stopped wearing any make-up. Ingredients are not listed on any of my make-up, I bougth them like 2 years ago. Could you advice me and letting me know if there is any particular products that you like? It will save me so much time. I contacted a lot of the companies, but they say that it will take them 2 to 4 weeks to answer me. I want to be pretty again!

    Lots of hugs for those who need it, cheers... Nathela. :P

  3. Why don't you return the Amy's dinners? Then you won't have to feel guilty about wasting money. When I first went gluten-free, I was returning several things a week after getting them home and realizing they contained gluten.

    Hi everybody!

    I would like to add a thought, here. Let's not forget that the cause is gluten. But, after years of damage, our intestines are like overworked. Soy, caseine, milk, egg and complex food like potatoes, rice... refined sugar are difficult to digest. Also, keeping a food journal is the only way to understand the missing parts of our solution.

    Please, have a look at these three books:

    ( once again they changed my understanding of the problem/solution)

    -The new Eating rigth for a bad gut by James Scala.

    -Breaking the vicious cycle by Elaine Gottschall

    -Dangerous grains by James Braly.

    I wish to all of us to start a spiritual and physical healing. Thank you so much for your support, Nathela. ;)

  4. thank you guys. It is good to know that other people have challenges with this as well. My husband's birthday was yesterday so Wednesday I baked him cookies and yesterday I baked a cake. I wore rubber gloves when I was baking, but I wonder if just doing that was enough to cause me any additional problems? I cooked dinner for the extended family last night. All of it was gluten free (except the cake) and no one even knew.

    I have 5 lunches scheduled this week, but I might just stick to the Boost I have been keeping in the car. I want to have a good week this week.


    I had so many setbacks after I went gluten-free. My make-up, shampoo, were the problems. BUt, something else was the problem.

    I would like to discuss it with you: CARBS FROM RICE, POTATOES, CORN, CHEESE and SUGAR.

    NOt only we have to eat gluten-free, but I deeply believe that we need to change our diet to help the intestines heal. Not eating complex food ( polysaccaharides) for the intestines to digest peacefuly, is NUMBER ONE PRIORITY FOR AVOIDING ANY SETBACK.

    Only the sugar from fruits: fructose, and honey are the only two sources of sugar allowed.

    Corn syrup, refined sugar, are toxics for us!!! Believe me!

    I followed the diet of a wonderful book called," The Special Carb Diet." I get no more of those awful endless fatigue. I got to know about this book from one of us. Thank you so much to the person who brought this book to me, It saved me from depression!!! Allelouha! Good luck!

  5. :blink:

    Last week, I was feelig so bad. :angry: MY GI wanted me to re-introduce gluten for an endoscopy. I had been so much in pain while I had gluten. I did not know what to think. Then, Peter. wrote a wonderful response to my post, with a lot of medical details. :P

    We made the decision with my husband that I would not re-introduce gluten if I have a biospy. My blood test is igg 16 and iga 8. I am on a gluten-free diet for the last 3 months. ;)

    Now, the question is to know: do I need a biopsy? How important is to know the statut of the small intestine to prevent lymphoma, cancer.....???? :o

    I have been more tired since I went gluten-free. I have only 20% of my energy. Some days, I can work for 3, 4 hours. Other days, I can not move, washing my hair feels like running 50 mile marathon. :ph34r:

    Of course, I am surprised to feel weaker than before. The improvement is that my pain is almost gone. (colon pain). But, I am still worried. This loss of energy, is so weird. I won't ever eat gluten again. I have the conviction that I am ceilac. Do you think that the Enterolab tests for genes, malabsortion and some York test for food allergies are enough to get better and to have a clear full understanding of the ceilac sprue? :huh: Thank you so much for all your support, this forum has changed my life!!!

  6. Why for god sake do I need to induce myself with gluten when I still have a positive blood celiac panel?!!!

    I asked my GI about the gluten challange and he said, AND I QUOTE HIM, " Judy, If I lit a candle and said put your finger in the flame to see if you get burned" would you have to do it to prove it will burn you???

    Love my GI....Loved the post...'does your GI need a new car:)

    Judy in Philly

    :lol: That's funny. Do I need to have a biopsy, though? A way to know that my small intestine is ok? What do you think?

    I would not do that. First, it can take time for your blood to go back to normal. Second, have you been 100% gluten free including products such as makeup. I would re-evaluate everything that you are using and consuming to make sure nothing is sneaking in. I have some lists if you would like them...not sure if you have them or not but they help for a general guideline.

    :lol: Thank you I would love to have the list ... I have hard time to find a body lotion, and sf30 sunscreen, and make-up... Nathela.

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


    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?


    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.

  8. Wow girl...sounds like you are really getting 'backed up'...not to be gross! I think that is a big problem. I was similar before going gluten-free...and I am a firm believer that not going daily for most people is an issue--sign of poor health or a problem going on. I did not feel well when I was in that state--and I didn't really even notice it till I did begin going on a regular basis. For me there are several factors that cause constipation--not being gluten-free completely, consuming dairy and lack of fiber. So, being gluten-free/cf, consuming fiber like beans, brown rice etc, plenty of water and psyllium on occasion keep me moving along. Not going regularly, and having your intestines packed full all of the time is not good. Also, being on a cycle of laxatives, natural or synthetic, is very unhealthy too--eventually, it can lead to a dependence on them and only exacerbate the problem. What do you take for relief, as you mentioned? Ever tried psyllium?

    :) Psyllium changed my life! Please try it ASAP! No more pain, bowel movements do happen!!

  9. First of all, CONGRATULATIONS on your pregnancy!!!

    I agree with everyone else, just keep eating gluten free during your pregnancy. It's a healthy way to eat, even without celiac. People who have to eat gluten free end up eating a lot more whole foods rather than junk food. So you're good there.

    As far as feeding your baby, it's always best to breastfeed as long as possible. But if that ends up not being an option for you (it wasn't for me) in the long term, there are a lot more varieties of formula out there now, and I could swear at one point I saw infant formula that was made with rice-milk as a base.

    When the time comes for baby food, it's super easy to make your own. Sweet potatoes, for example - you steam them until they're soft and then put them through a food mill. You can buy a food mill that's especially made for making baby food at Babys R Us. When the baby gets older and can eat more chunky food, you can just mash it with a fork. So it IS possible to have pretty good control over what goes into your baby's mouth.

    I'm not sure if jarred baby food is considered completely non-contaminated, but the ingredients of sweet potatoes are: Sweet potatoes and water. Even in regular non-celiac circumstances, doctors will tell you to only introduce ONE type of food at a time to your baby so that you can check for food allergies.

    As far as celiac goes, if I found out about celiac before I had my kids, I would definitely have the genetic testing done. You can get it through Enterolab for $100. It's just a cheek swab (just like on the talk shows). Enterolab sends it out to a top immunogenetics lab called Laboratories at Bonfils. They test for the celiac genes, as well as the gluten sensitive genes. They email the results to you.

    Because I have a doctor who isn't very familiar with celiac (but totally admits it) and family members who basically think I'm making this whole celiac thing up or exagerating it, I talked to Enterolab about sending me paper copies of their results. They also offered to send the original results from Labs at Bonfils. So I'm going to have a piece of paper to put in front of these people.

    I'm not sure if a child needs to be a certain age to get the genetic testing done, but I would get a genetic test on my child as soon as possible, just so I would know, rather than cross my fingers and hope they don't get symptoms, or hope I didn't get a pediatrician who didn't know celiac from a hole in the wall.

    At this point, I'm pre-diagnosis, just sent in my genetic test to Enterolab, and we'll see what happens with that. If I have positive genetic markers, I'm testing my kids as well. I've got a 3.5 yo and an almost-2yo. I'd rather know what's going on with them NOW then have them sustain damage or symptoms they could avoid.

    And bluelotus, I'd like to say I'm shocked and appalled at someone saying that to you. Unfortunately, I'm just appalled. People can just be so cruel and insensitive. Grr...



    What is the TTG test from York? I had all your symptoms. I am having the exact same numbers of Igg and Iga. I am planned for an endoscopy in January. But, the GI says I have to eat gluten again after 3 months of gluten-free diet. Do you understand why?

  10. :blink: I feel awful! My GI tells me that I HAVE to eat gluten again if I want to have a clear understanding of my biopsy. I started to be on gluten-free diet three months ago. My igg, iga are still abnormal: 16 and 8.

    Why for god sake do I need to induce myself with gluten when I still have a positive blood celiac panel?!!!

    What do we look for? A confirmation of celiac disease? Or, a history? I am really confused..

  11. I spoke with Dr. Pietzak at Children's Hospital. She referred me to Dr. Zipser in San Dimas. I set an appointment to see him in January. Thanks for the referrals.

    I live in Los Feliz, in Los Angeles. I am also looking for a good celiac GI specialist in the area. So, if you like the new doctor, can you let me know? Thank you. I am going to research on naturepath.com... I heard it might be helpful. :)

  12. 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?