Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Confused...
0

5 posts in this topic

Hi Everyone,

About 2 years ago, I started to get very ill. I had always had stomach problems growing up and all of the doctors I went to told me I had IBS. But, anyway, about 2 years ago I started having diarhhea everyday, very bad stomach pain, extreme fatigue, bone pain, muscle aches, anemia, mouth ulcers, chronic yeast infections, headaches, paleness, abdominal distention, etc. The list of symptoms goes on forever.

My pediatrician noticed that my Anti-Gliadin count was elevated and sent me to a GI specialist to see if I had Celiac Disease. The specialist didn't even bother running anymore tests and told me that I just had IBS. After seeing many doctors, I was finally diagnosed by an alternative doctor as having "non celiac gluten enteropathy." They also told me that I had many other food allergies, as well. I was then put onto a gluten free, dairy free, and corn free diet.

After being on this strict diet for several months, I wanted to have a confirmed diagnosis. So, I saw another GI specialist who told me to start eating gluten for 3 days and then he would perform an endoscopy and a colonoscopy. At the time, I didn't realize that this was too short of a time period. But, I went through with it and all that was found was mild inflammation of the duodem (sp?).

The next year, I saw another GI Specialist since all of my symptoms hadn't cleared up. He put me on a gluten free diet for 2 months and then performed an endoscopy. He said that the results were normal and that there was just some mild inflammation again.

This year, I had heard about a very good doctor that specializes in Celiac Disease. A few people I knew went to him and recommended that I see him. He put me on a gluten challenge for a little over 2 months and performed an endoscopy. After the endoscopy he told me that it looked like I had Celiac Disease, as he noticed a lot of intestinal damage. But, after the biopsy reports came back they were negative for Celiac Disease. Although, he saw flattened villi, and villi that looked as if it had partially grown back from being damaged, along with scattered leukocytes, focal cryptoplasia and doudenal mucosa this was supposedly negative for Celiac Disease.

Since being on the gluten challenge, I have had a return of many of my symptoms. I have chronic yeast infections, stomach aches, headaches, neurological problems, mouth ulcers, fatigue, bone pain, etc. The doctor said that it is my choice whether or not I want to go on a gluten free diet, although I don't have Celiac Disease. However, I am afraid to do this because my symptoms could just be coincidental. But, as I stay on this diet I seem to be getting sicker and weaker, and recently I have been getting bladder infections, yeast infections, and extreme thirstiness which is getting me worried that with my radical change in diet (from strict gluten free, to very heavily based on gluten) I am giving myself diabetes.

So, I was wondering what any of you think about my biopsy? Do you think that it could have been signs of early celiac disease? Also, I have proven to have Celiac Disease in the past on the Anti-Gliadin blood test (the less specific one) and the Enterolab results and I have the DQ-8 gene for Celiac Disease. Would it be worth repeating the blood tests to see if any of the numbers have risen since I have been eating gluten? I'm interested in everyone's advice.

Thanks.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I feel, from what you have written, you have been diagnosed with Celiac. Genetically, biopsy (flattened villi), Anti-Gliadin blood test,and positive dietary response to the gluten free diet.

You should also look into getting tested for Diabetes, and other food allergies.

Laura

0

Share this post


Link to post
Share on other sites

The dietary challenge (getting worse when you go on gluten, getting better when you go off) IS a valid test in and of itself. Listen to your body! :-)

0

Share this post


Link to post
Share on other sites

I had all of the symptoms that you are experiencing. I have been diagnosed with celiac (one year ago). But with all your symptoms, I would try to go gluten-free for about 2 months and if you feel better and your symptoms disappear, then I would stick with the gluten-free diet. Believe me, you don't want to give your body any more damage. I also have osteoporosis and I'm 37 years old. I always chalked up my symptoms to being just allergic to certain foods. Or I would say that I ate something that didn't agree with me. I feel alot better since going gluten free, and I've even gained some weight (which was impossible for me before). I am also in the middle of trying to get my mother a proper diagnoses. She tested negative for the blood tests for celiac. She tested positive for the DQ2 celiac gene, AND she has alot of the symptoms that I had prior to my diagnoses. She is trying to decide if she should have the biopsy or to just go gluten-free and see if her symptoms disappear. Good luck to you, and I hope you feel better soon.

Kris in TN

0

Share this post


Link to post
Share on other sites

Thanks for all of your responses! I had to go to the doctor today because I was feeling worse and worse. It turns out that my blood sugar is very low and the took blood to check for other things, such as thyroid problems. The doctor also recommended that I go back on a gluten free diet.

Also, I was able to get in contact with the doctor who is investigating whether or not I have Celiac Disease. He feels that since my blood sugar is low I should get checked for Addison's Disease. However, he is also repeating the blood tests for Celiac Disease to see if any of the antibodies have increased since I have been on the gluten challenge. Also, he recommended that I resume a gluten free diet after the blood tests tomorrow morning.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,367
    • Total Posts
      920,556
  • Topics

  • Posts

    • This easy to make bean dip makes a great addisiton to any good munching session. Goes gret with salsa and gluten-free beer. View the full article
    • Good grief!  :o. I'm so sorry, I wish there was something I could do or say to help you.  I agree with the NP, your primary needs to be requesting copies of your records from the other doctors, as well as the records and lab reports from your hospital stay.  They are supposed to work together as a team, not just individually out in left field.
    • Just a quick one to say I got a diagnosis of celiac disease today. I know in the past it's been helpful for me to know the outcome for other folk, so thought I would update. The moral of this story is even with a VERY borderline blood test it's worth persisting. thanks for all the help Sue 
    • Our own resident gluten-free expert is Suzie Davies. Suzie has been dedicated to gluten-free products since she was diagnosed with celiac disease ... View the full article
    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,443
    • Most Online
      1,763

    Newest Member
    Richard Green
    Joined