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tummyache

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  1. I really hate to write unfriendly things about people online, but I'd like to warn anyone in Colorado about my dermatologist so that they won't go through the same thing I did...

    I've gone to Dr. Barbara Reed a couple of times over the past few years because she is a really highly regarded dermatologist in Denver. She's always been very nice and she clearly knows her stuff, but I went to her last week and at the end of my appointment I mentioned that I was diagnosed with celiac disease last year and I was wondering if she knew of any good face lotions that are gluten-free. Instead of just saying that she didn't know of any off the top of her head, her whole demeaner changed and she said "you aren't eating it" in a snide tone. Taken aback, I stammered something about how it could still make its way into my mouth and I'd rather be safe than sorry. She responded by launching into a 10 minute story about how one of her friends had stayed with her for a while and the friend was on a really restrictive diet but it turned out to not be celiac disease at all, and I should really just be listening to my body and not worrying about labels. At this point, I was on the verge of tears so I didn't respond, and luckily I made it to my car before I started sobbing.

    The fact that a medical professional who knows nothing about my horrible medical history (other than that I get the occasional zit) could make such off-base, blanket statements in such a condescending manner makes me want to throw up. Why do so many doctors turn nasty at the first mention of celiac disease?

    I am going to be honest here and I hope I don't offend anyone. First of all, many doctors are not educated about Celiac. Secondly, when it is brought up to a doctor they immediately begin thinking, "hypochondriac." If it isn't "hypochondria" then it must be some sort of eating disorder. So, they try to disuey you from thinking you have some gluten intolerance problems. If you are a woman, they will immediately send you to the OB/GYN because it has to be some kind of reproductive problem. UGH!


  2. Marlene,

    Tell them to get a new GI doctor. If I heard an absurd statement like that about long hair, I would be out of there quicker then ever!! PLEASE, PLEASE encourage them to go to a new GI doctor especially if a diagnosis is that important to them!! Good Luck!!

    She has LONG HAIR??? What does that have to with anything? Are all Celiac's bald? That makes no sense at all! Yes, definitely tell them to see another GI person. This one sounds like a total quack.


  3. Allergists have always manipulated diets and watched for clinical improvement in symptoms. GI docs always scope and biopsy and make determinations on the result.

    If a food item is removed from the diet, and a patient feels remarkably better, that is the proof one needs.

    A GI evaluation, as far as I am concerned, is to make sure a patient does not have additional problems that need to be addressed, such as a malignancy, or inflammatory bowel diseases that can occur with gluten sensitivity.

    The problem with patients going on a gluten free diet without a positive biopsy is that, after a while, some of the patients decide a gluten free lifestyle is too restrictive. Then they want a biopsy! And for all of the wrong reasons, to stop being gluten free.

    So, a positive biopsy will provide re-enforcement to the patient that they must live a gluten free lifestyle. A negative biopsy is never an indication to eat gluten, especially, when there has been clinical improvement in the symptoms when the patient is gluten free.

    Gluten is the biggest toxin in the American diet. As far as I am concerned, no one should be eating it.

    Gluten is a toxin! I agree with you!


  4. I am so glad that another person has only the IgG levels are high. I have been so confused since I got my blood work back and it showed that was the only part that was high. I am still debating on starting an gluten-free diet, or wait to talk to a gastro dr. Or if i should see im allergic to other foods and start to do an elimiantion diet to see what im allergic to. Any one have advice on what would work best for me.

    Willow what are you going to do, an gluten free diet?

    dan

    My IgG came back negative, but my IgA was positive. What does that mean? I'm also really confused and would appreciate any help I can get.


  5. Does anyone else deal with all over body achyness? I just would like to experience a day without feeling achy all over. What do you take or do to cope? Would taking Tylenol help me?

    Yes, I too have that. I'm in my thirties and I feel like a ninety year old person. I have no strength sometimes and other times I'm brimming with energy. I think it mostly happens when gluten finds itself in my diet. YUCK!


  6. I've been gluten free (for the most part) for a little over two months. I'm positive by Enterolab, negative by three docs, so I get surly and "test the waters" now and then. I was feeling frisky Monday morning and ate a half of a pancake at Denny's.

    Question - if you were having a reaction because of gluten, how long would you have expected before you noticed a problem? Immediately? within 24 hours? within 48 hours?

    I react usually right after the meal. It feels like a trap door opened and cement fell through it. It hurts and I am uncomfortble for days. Sometimes I have the runs and sometimes its just horrid constipation. All I know is that it hurts and I bloat and feel like I caught some bug.


  7. Had a (very small) hamburger and a milkshake for lunch today. Have felt like crap ever since then. So now I'm trying to decide if it was the gluten in the bun, the dairy in the milkshake or the fat in the hamburger that has left me with nausea, lightheadedness, dizziness, and an explosive intestine. Perhaps it was all three. I was just fine before I ate it almost 5 hours ago.

    Stupid, stupid, stupid. :angry: I should know better by now.

    I did that not too long ago and I felt like I had hardened cement in my stomach. I paid for it for 2 days. It tastes soooo good, but feel so bad!


  8. I'm not sure what to make of your tests. I am actually wondering the same thing about an elevated gliadin IgA....

    From all of the reading on this I have done, however, it seems as though the IgA and the IgG are the first things to normalize when a person goes on the gluten free diet. It seems as though your IgA should not be elevated if you're gluten free. In fact, doctors often check the IgA levels (along with other tests) to determine if a person following the diet strictly like they should be. Also, NONE of your blood tests should be considered accurate since you were eating gluten. A big gluten-filled breakfast for a day just isn't going to cut it. If you want reliable results you're going to have to do a gluten challenge.

    Were you very strict with the gluten-free diet when you were on it? How long were you gluten free? I would definitely not go in for an endo now (unless you have other things going on like relfux or something that needs to be checked out) because that will also be negative unless you do a gluten challenge first.

    Good luck!

    Thanks for your response. I kind of thought that I should be eating a steady gluten filled diet before testing. The funny thing is that I told my doc that I had been on a gluten-free diet for 2 years. The only time I ingested anything gluten was by mistake (placed into something without my prior knowledge). She went ahead and tested me anyway. I had had a high gluten breakfast that morning and that was it. I guess I have to be retested. I'll find out more of what I'm supposed to do when I meet with the GI doc. Hopefully, I can explain the circumstances to her, get retested, and not have to have the scope done right away. I'm dreading this whole scope business! I wish the referring doctor was more knowledgeable in the first place, then I wouldn't be in this predicament!!!


  9. I am on the side that if being on a gluten-free diet makes you feel better then why go through the tests and the gluten challenge? In the end it is up to you and I wish you the best, TummyAche! Oh, and gluten-free can be mouth watering.

    Thanks for replying. :) Yeh, some of the gluten-free stuff can be really good. I'm just wondering why this doctor diagnosed me with Celiac and then came back a week later and said that my test was "inconclusive." I just don't know what I should be eating....I guess I'm just sick of all the hoops I have to jumps through. I wish my doc was more informed. I wonder if I should go to another doctor and have them run the blood panels again....just a thought.


  10. I am really confused at the moment. Two years ago I suspected that I was gluten intolerant. I would have gas, diarrhea, bloating, tiredness, aches, and sometimes small blistery looking rashes on my body. I decided to get of the gluten and try living a gluten free life. Anyway, I procrastinated on getting the blood work done. I went in two weeks ago and talked to an internist. Keep in mind that I had been gluten free for a long time, but I did eat a heavy breakfast of gluten containing foods before I went. So, she ran the panels and called me a week later to give me my results. She said that I had suspected celiac. All of this is based on the fact that my Anti-gliadin Iga was positive. The Igg was negative as was the endomysial test. She also noticed that I was borderline anemic. She showed my results to a gastroenterologist and he said that I needed to be scoped. So, I'm not sure what is going on. From everything that I've read I can't make sense of the elevated Iga. Does this really warrant an endoscope? Would the gastroenterologist want to do an endoscope if he felt that I didn't have the disease? I really wished she had called and said that I was ok. I would love to eat whatever I want! Gluten-free is not the most appetizing thing in the world!!! Also, do I need to be off or on my gluten free diet? I have a consultation visit with the GI doc in 6 weeks, then I guess they will schedule a biopsy. I don't know what to do or think at this point. Did the internist make a mistake and should I forget all of this nonsense??