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

This Was The Diagnosis
0

4 posts in this topic

http://www.ncbi.nlm.nih.gov/entrez/query.f...p;dopt=Abstract

So I'm on a steriod and have already heard my tummy growl. I sure hope for the best and want to thank you for all the attention, hospitality and caring posts. This disease is rare and we know the guy who did the pathology (smart guy), he examined all the biopsies so no mistakes there IMO. And my Doc. seemed very concerned about Celiac, he just said you absolutely don't have it. I just don't want to burn any bridges, and come crawling back on my knees asking everyone for some recipes LOL. But I would like to encourage anyone not having just a little success with the Celiac diet to try this procedure and, ask the Doc. what this disease is all about. "Good luck to all" and "God Bless"

Still got my darn panic attacks, but I think if I can get this stomach under control the panics may subside, I HOPE. :)

Karl

Tabatha's healthier husband :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

Karl, I hope you know that celiac disease and eosinophilic gastroenteritis can be connected? In fact, a gluten-free diet is still a good idea, as it is usually caused by allergies and intolerances.

Anyway, I hope you'll feel better soon.

0

Share this post


Link to post
Share on other sites
Karl, I hope you know that celiac disease and eosinophilic gastroenteritis can be connected? In fact, a gluten-free diet is still a good idea, as it is usually caused by allergies and intolerances.

Anyway, I hope you'll feel better soon.

Thank you for that information, I did go and eat a chocolate bar for the first time in almost 6 months, well just a bite LOL (we were going Lactose also). Our young son, exibits the same symptoms as me, just not all the vomiting and other junk, and he's responded very well to a gluten free diet. He actually grew an inch and half in 1 month. I know thats not alot but we were getting concerned. This little guy might have a better chance than I did, thanks to places like this and new procedures and drugs. Again, any more input on this diagnosis would be appreciated.

Sincerely,

Karl

0

Share this post


Link to post
Share on other sites

I also had negative blood test and negative biopsies. I tried the gluten-free diet just in case it might help.

My life has never been the same.

I was housebound due to a combination of my symptoms and having a newborn and a 2yo. Ever try to take 2yo and a newborn in a baby carrier/carseat out of a shopping cart when you're having 30-second-notice diarrhea, then still having to run across Walmart? So yea. Housebound. The only time I was ever able to even leave the house was when a friend of mine would come help me do errands, or if I was able to get a babysitter.

I also had mobility issues. I was barely able to walk for the 2-3 years prior figuring out the gluten connection. I had to use the grocery cart for a walker, and it would still take the better part of three hours to do my shopping. If something was on a low shelf, it may as well have been 100 miles away because there was no way I was going to be able to get it.

When I found out about gluten - 2 September 2005; just like it says on my join date, I had already decided to make an appt with my doctor so I could find out what I needed to do to apply for a handicapped placard for my car.

That doctor appt ended up being a request for a celiac panel, of which she could only find two of the tests on the computer. Both came back negative, one on the upper limits of negative, but still. By that timme I had already noticed that on the days I didn't eat gluten, my GI symptoms, pain and mobility issues disappeared. Poof!

On the days I ate gluten, all my symptoms were there. On the days I didn't... Poof! All gone.

While this was going on, I was waiting for my GI appt, endoscopy, follow-up, etc. My biopsies came back negative too.

By the time I did the biopsy in Feb 06, (yes, if you're counting, that's five months..) I had already thrown in the towel and went gluten-free full-time. I just couldn't take it one more day. Making myself eat gluten for test results seemed to me like putting my hand in hot oil.

I started just not eating gluten on the days when I had a lot to do. Then it was more and more days without gluten. But then I couldn't face making myself feel miserable just because of tests. I got addicted to feeling HEALTHY. I became an addict. I felt great. I was happy. I was able to do whatever I wanted whenever I wanted. I can go places and do things. When two years ago I thought I was headed, quickly, to a wheelchair and I don't even want to discuss the GI symptoms because to me that was much worse than the mobility issues.

I went from not being able to even bend over to touch my knees, to being able to move furniture around and climb an attic ladder to put heavy boxes up into the attic in the space of a month. It was awesome.

It still makes me ill to think that if I hadn't taken my health into my own hands, and tried the diet, I would have been stuck in my house and a wheelchair, and God knows what else for the rest of my life.

But, remember, I don't have celiac.

THEY can call it whatever they want. THEY also can't make me eat gluten. There would have to be Fear Factor money involved for me to even consider one single bite. Even then, I don't know if it would be worth it.

My dad died of stomach cancer in Dec 2004; diagnosed stage 4 in June 2004. That's six months. At the time, if there was a cure and it cost a million dollars, our families would have been able to combine resources and pay it. He died three minutes after Christmas day was over, 25 days before his first grandson turned one year old. He was able to see way more of my life than my mom though. She died 11 years earlier, of cancer as well.

Trust me when I tell you that health is infinitely more valuable than anything else in the world. No contest.

So just make the investment. Try the diet. If it works, it will be worth far more than anyone can count. If it doesn't you'll at least know for sure it's not gluten.

Nancy

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
      104,105
    • Total Posts
      920,391
  • Topics

  • Posts

    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
    • You are right. The weirdest part is that I feel fine, however, I am sure cross-contamination is doing damage even when we don't think it is. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,144
    • Most Online
      1,763

    Newest Member
    GlutenFreeGreg
    Joined