HELP!!! with celiac disease... or something else????

leavinglasvegas
leavinglasvegas Posts: 1,495
edited September 20 in Motivation and Support
I recently learned I have food allergies and sensitivities. Gluten, wheat, dairy, eggs, peanuts, corn, and tomatoes being the major culprits. I have ALWAYS had digestion issues. Mainly it was believed that I couldn't digest meat, so I didn't eat it.

I had my allergy testing done at my ENTs office and took the results to my PCP who was aware of all my issues. He said he thought it was a little extreme and not to take it so seriously. I followed the advise of my ENT and eliminated all the positive foods from my diet and requested my PCP to test me for Celiac. My PCP diagnosed me with Celiac based on my removing gluten and feeling better and nothing more.

I went with my gut and told my PCP I want to be tested anyway. He said to go back to my colon doctor. I tried to explain that my colon doctor deals strictly with colon and rectal surgery, not small bowel endoscopy. He said I should see him anyway to get a referral to a GI doc. Let me point out that I'm paying for all this! :grumble: So I did the research and found out what blood tests needed to be taken and how the hospital wants referrals written for this type of procedure. He did the blood tests, but wouldn't write the script for the procedure. I told him that my stomach was cramping, I had no appetite, food felt like rocks in my stomach, I was having sudden bouts of diarrhea and more constipation. I asked him to refer me to a GI out of his hospital group. If I stay in his group, I can get an uninsured discount through the hospital. He said it was nothing, but if I was concerned to go to my colon doc even though hes out of another hospital.:explode:

Again I did the research and found myself a GI doc out of another hospital and went to see him. I figured if medical bills are going to make me homeless, I'll at least be healthy enough to fend for myself in my box under an overpass. They took me immediately after I explained what was happening. The doctor, who is on call this friday, had me put on the schedule anyway for both a colonoscpoy and small bowel edoscopy. He told me to eat gluten from now till the procedure so he can see what it is doing. He will also be taking bipsies from the top of my tract to the bottom. He was glad I came to see him and agreed that my colon doc, whom he knows, could not have done anything for me. He didn't want to speculate or scare me, he just told me he is on my side.

The odd thing is, my PCP said my blood work came back fine. )He also admitted to having a friend, who is a GI specialist, read them because he didn't know how.:noway: OK, I know I'm firing this jacka$$.) My daughter also tested positive for the same allergies and I'm not about to let him guess at her stuff. When I asked for a referral for a pediatric dietician, he didn't think it was necessary. He said not to worry if she eats that stuff. (Prior to removing the foods, she had hives from head to toe, constipation, diarrhea, and headaches.)

I'm really nervous about Friday. I will be totally anesthetised, but I woke up during my last colonoscopy because I felt them untwisting my colon. Seriously, that hurt like a MFer! :frown: He promised this time they would have me TOTALLY out! I'm even more nervous because this has been going on for so long. When I was 15 I had allergy testng. I tested positive to all these foods, but my mother thought it was quackery. It was too expensive and too inconvenient for her to change my diet. She told me I grew out of it because I didn't have actual allergy symptoms. Now she denies that they ever told her I had these allergies.

I guess what I'm wondering is, how bad is it that this has gone on for so long. If my blood tests didn't show celiac sprue, could I be facing something else? Did it matter that when the blood tests were taken I hade already been off gluten for almost 3 weeks? I read that untreated food allergies can lead to horrible things like cancer. I'm not trying to make drastic assupmtions, but I want to be real with myself. Can anybody tell me what they know about this stuff?

Thanks
Holly

Replies

  • lotusfromthemud
    lotusfromthemud Posts: 5,335 Member
    First off, sympathies...how terrible.

    Second off, if you've been avoiding gluten before your blood test for celiac sprue, it will come back negative, even if you are a celiac. The blood test only works as a prelim diagnosis, and only if you've been eating gluten. The only way to know for sure is a biopsy of your intestine. But, I would think your doctor would know this, right? But, it sounds a bit hinkey...with the doc right now.

    HTH.:flowerforyou:
  • perrim
    perrim Posts: 117
    I have a very good friend with celiac (and another good friend who has a gluten sensitivity, but not true celiac) and I used to be in the health food business and dealt quite a bit with celiacs and people who just stayed away from gluten.

    Good news is that even if you're diagnosed with celiac, once you completely eliminate gluten from your diet, you will fee like a new woman almost immediately. Sounds like even if you're not officially diagnosed, you should eliminate it anyway based on your post. It also sounds like you were lucky enough to FINALLY find a good doc who understands what you're going through and that is HUGE. And hopefully he can answer all of your specific questions (like if it mattered that you hadn't eaten gluten for 3 weeks before the test, etc.)

    Bad news is that if you have to COMPLETELY eliminate gluten from your diet, it can be very challenging. It is hidden in so many things that you would be surprised about - anything with "natural flavors" that does not specify that it's gluten free could be a culprit for example. But, it's become an increasingly popular issue which means there is a TON of information, lists, etc on the internet for you.

    The other thing is that with your other food allergies, you're best off staying away from those foods even if you have not had acute reactions to them. Years ago, I tested positive for allergies to hazelnuts, cherries, hops and soy. And even though I've never had a true allergic reaction to any of these foods (with the exception of cherries once), I stay away from them because my allergist told me that since I tested positive, the more I expose myself to those foods, the higher the likelihood that I will develop allergic reactions to them. Case in point, the one time I had a reaction to cherries, I had eaten a lot of these little snack cake things from the health food store with cherry filling in them. I didn't realize how many I ate and didn't think about the whole cherry thing and before I knew it, my mouth was super itchy and went numb.

    I hope this helped a little :) Good luck!
  • erumer
    erumer Posts: 5
    Okay -- many things wrong with what was written ---
    You should NEVER get tested for allergies at an ENT. You go to an ALLERGIST who has the proper testing to diagnose you with allergies. To have GI symptoms from a food allergy is very uncommon -- That would be more of an intolerance. Food allergies present themselves as hives/rashes, or swollen/itchy mouth, lips, tongue, throat predominantly. I'm not arguing that you might be sensitive to certain foods, but it is not an allergy. Don't believe what ENTs may tell you (or hollistic persons) about your "allergies." Second, a doctor should never just diagnose you with celiac disease by you telling them you have a wheat sensitivity. They need to do a full celiac panel -- And it sounds like those labs came back negative. If he didn't know how to read it, you're right - fire him. He doesn't know what he's doing if he has never read a celiac panel before. It sounds like you are being pulled around for nothing. Have you been tested for IBS? Sounds more like that than anything. Most people with celiac disease can never gain weight and are constantly low in vitamins and iron because their body will simply not absorb it. Don't get pushed around by all of these doctors. Do you own elimination diet -- Eliminate things one by one, or start from basics and add them in one by one. (Google "Elimination Diet"). You don't need to pay a ton of doctors for them to tell you that. Sensitive stomachs are common, don't let these guys freak you out about it and make you think something terrible is wrong.
  • leavinglasvegas
    leavinglasvegas Posts: 1,495
    Okay -- many things wrong with what was written ---
    You should NEVER get tested for allergies at an ENT. You go to an ALLERGIST who has the proper testing to diagnose you with allergies. To have GI symptoms from a food allergy is very uncommon -- That would be more of an intolerance. Food allergies present themselves as hives/rashes, or swollen/itchy mouth, lips, tongue, throat predominantly. I'm not arguing that you might be sensitive to certain foods, but it is not an allergy. Don't believe what ENTs may tell you (or hollistic persons) about your "allergies." Second, a doctor should never just diagnose you with celiac disease by you telling them you have a wheat sensitivity. They need to do a full celiac panel -- And it sounds like those labs came back negative. If he didn't know how to read it, you're right - fire him. He doesn't know what he's doing if he has never read a celiac panel before. It sounds like you are being pulled around for nothing. Have you been tested for IBS? Sounds more like that than anything. Most people with celiac disease can never gain weight and are constantly low in vitamins and iron because their body will simply not absorb it. Don't get pushed around by all of these doctors. Do you own elimination diet -- Eliminate things one by one, or start from basics and add them in one by one. (Google "Elimination Diet"). You don't need to pay a ton of doctors for them to tell you that. Sensitive stomachs are common, don't let these guys freak you out about it and make you think something terrible is wrong.

    My ENT's sub-specialty is Allergies. They have a full staff of allergists in the office. My test was done by Alletess Medical Lab. I tested positive for Milk, eggs, corn, tomato, wheat, and peanut using IgG testing. The IgE, sensitivities included gluten, cheese,yeast, and several others. The IgG testing is accurate. They can cause headaches and abdominal cramping. I did have other allergy symptoms including hives, asthma, multiple skin rashes, allergic sinusitis, and itching.
  • pettmybunny
    pettmybunny Posts: 1,986 Member
    I was also tested for allergies by my ENT. He is also an allergy specialist. The food allergy test was a blood draw that was sent away to a lab. The environmental allergy test was a prick test done in the office. I'm not sure why you're telling the OP that her ENT should not have allergy tested her.

    Anyways, I tested positive for dairy and egg allergies as well. I had no symptoms (I thought) of allergies to foods, and I drank milk every day at dinner and on my cereal. I had eggs straight up 3 or 4 times a week as well as in my regular cooking. No GI issues, no itching, no hives, no swelling.

    After cutting out everything dairy and with eggs (it involves a hell of a lot of label reading), I feel like a new person. I didn't realize how crappy I felt every day, because I felt that way EVERY DAY. I went from sleeping 14 to 15 hours a day (yeah, that indicates a problem, I know) to sleeping a normal 7 to 8 hours. The constant headache I've had for the last 3 years went away. I still get headaches every now and then, but I can take a couple of excedrin and they go away. Before I found out about my allergies, I was popping 2 excedrin and 2 ibuprofin every 3 or 4 hours just to take the edge off, the headache never went away though.

    To the OP... Good luck with everything, and I hope they find what's wrong. There is a registered dietician that I see who has celiac, and she said her life was miserable before they figured it out. And also that it took a while before they did. But now she's happy, healthy, etc. I'm sure this new doctor (who listens to you) will help you find out what's going on.
  • erumer
    erumer Posts: 5
    Okay -- many things wrong with what was written ---
    You should NEVER get tested for allergies at an ENT. You go to an ALLERGIST who has the proper testing to diagnose you with allergies. To have GI symptoms from a food allergy is very uncommon -- That would be more of an intolerance. Food allergies present themselves as hives/rashes, or swollen/itchy mouth, lips, tongue, throat predominantly. I'm not arguing that you might be sensitive to certain foods, but it is not an allergy. Don't believe what ENTs may tell you (or hollistic persons) about your "allergies." Second, a doctor should never just diagnose you with celiac disease by you telling them you have a wheat sensitivity. They need to do a full celiac panel -- And it sounds like those labs came back negative. If he didn't know how to read it, you're right - fire him. He doesn't know what he's doing if he has never read a celiac panel before. It sounds like you are being pulled around for nothing. Have you been tested for IBS? Sounds more like that than anything. Most people with celiac disease can never gain weight and are constantly low in vitamins and iron because their body will simply not absorb it. Don't get pushed around by all of these doctors. Do you own elimination diet -- Eliminate things one by one, or start from basics and add them in one by one. (Google "Elimination Diet"). You don't need to pay a ton of doctors for them to tell you that. Sensitive stomachs are common, don't let these guys freak you out about it and make you think something terrible is wrong.

    My ENT's sub-specialty is Allergies. They have a full staff of allergists in the office. My test was done by Alletess Medical Lab. I tested positive for Milk, eggs, corn, tomato, wheat, and peanut using IgG testing. The IgE, sensitivities included gluten, cheese,yeast, and several others. The IgG testing is accurate. They can cause headaches and abdominal cramping. I did have other allergy symptoms including hives, asthma, multiple skin rashes, allergic sinusitis, and itching.

    You don't need IgG testing. The allergy component is IgE. There is no need to ever draw the IgG unless you are testing for immunodeficiency.
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