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

When Do I Start Feeling Better Again?
0

6 posts in this topic

I feel frustrated. I have eaten gluten stuff my whole life. I've always had trouble with my gut. When I cut out gluten from my diet a couple weeks ago I felt great. My daughter immediately had a relief from some of her symptoms. The doctor asked us to go back on gluten because we didn't have test results but this was after blood test. VERY ANGRY with my doctor... we went back on gluten and felt horrible. We get test results and they are of course negative because we'd been off gluten (actually he has my results and has still not called me yet... I think I may have mild case or something like that.). ANYWAY I am ticked because he immediately said for my daughter to go gluten free for 14 days to see if it made a difference to her weight gain. Well, why did he tell me to have us start eating gluten again if he was just going to tell us to get off gluten as soon as test results came in?

Now we have been back off gluten since yesterday afternoon and I feel like crap. My stomach is still in knots. My daughter is having trouble still. My husband thinks that going off gluten wasn't the cure all afterall. In fact he was irritated with me about it saying that we should just put her back on it. The frustrating part is that he called me about 25 mins. later on his way to work to say that he was noticing that normally his gut would be all upset but it actually feels better and that he thinks we should keep eating gluten free. I feel soooo frustrated. Why aren't I or my daughter feeling better yet? I know stuff comes back with a vengence... does that mean it also takes longer to go away???

0

Share this post


Link to post
Share on other sites


Ads by Google:

Yes, getting glutened after being gluten-free for a while is no fun. I have only bee gluten-free for 5 weeks or so. After 3 weeks of going gluten-free, i got accidentally glutened and it knocked me down flat on my back for 48-72 hours. Had to just sleep it off. To me it was a good reminder that gluten really is like poison to my system, and that incident has made me become more vigilant about avoiding gluten in all forms-I try to stay positive and chalk it up to a learning experience. But while I was in the throes of getting glutened it was hard to think clearly. I understand how you feel now-it WILL work itself out of your system and you should get back to feeling good, like you were when you first went gluten free.

As far as your doctor whom you are frustrated with, I can totally understand your frustration. I was misdiagnosed for 30+ years, and it was my wife, NOT A DOCTOR, who diagnosed me. Without the internet, and my wifes vigilance in finding out what was wrong with me, I would still be sick. I have moments where I can look back, and I get downright pissed-off(for lack of a better word) at all the doctors who knew my symptoms(IBS, Bloating, Diarr and Constip, Agonizing stomach pain, Frequent daily heartburn, Chronic Fatigue, Depression, etc, etc etc.) Yet no doctor ever put it all together and they never mentioned celiac disease. I never heard about celiac until 6 weeks ago when my wife said she thought she found my cure-and it was right.

So, I had 2 options. I could, 1. Stay mad about the dozens of doctors who misdiagnosed me, which would get my blood pressure up and generally stress me out. Or I could 2. Let it go, enjoy my the NEW ME and my newfound energy and health, and just start taking responsibility for my own well being(and not relying on the doctors to give me a pill to fix all my ailments.) I have felt like crap for 2 decades and now that I have found relief and found my cure, I refuse to live in the past and the pain. I choose to move forward in my cure and as soon as your recent glutening gets out of your system you will feel better and have a brighter outlook. I promise.

Good Luck

1

Share this post


Link to post
Share on other sites

You are right about that. It doesn't solve anything!!!

OK - so here is my concern... we don't have a diagnosis and will never get one unless we go back on gluten for probably 3 months... the first time we went gluten free symptoms went away sooooo fast (one symptom for my daughter went away the same day she went gluten free). I am shocked and confused that is not happening again. So I just want to confirm that this is possible to happen i.e. the first time gluten free you get faster results than later times gluten free. I mean could it have just been a coincidence before that certain things happened or maybe I just saw in my daughter what I wanted to see because I wanted a cure-all? I was so positive it was gluten since it was so instantaneous. And since this time around it's not happening... nothing has been fixed... I am so confused.

And the other part is that I am having to push soooo hard with my husband about my daughter and maybe I just overreacted. (I do know my tummy hates gluten but that's all I know for sure) And if it's nothing than I'm tired of fighting my husband on this. He called me this afternoon to say his insides are feeling better already (he's been gluten free since this morning and got those instant results that I'm not getting this time around)... he says this now but after knowing him for 5 years I know that this weekend he could say he never said that and be upset with me again.

0

Share this post


Link to post
Share on other sites

Katie, I think the first thing you have to do is be clear in your mind where you want to go. You sound so conflicted right now.

1. You know that gluten is bad for both you and your daughter.

2. You and your daughter both felt improvement when you went gluten free (no, I am sure it was not a figment of your imagination.

3. Neither of you has a diagnosis.

4. In order to get a diagnosis you must poison yourselves for 2-3 months.

5. When you started eating gluten again your response was worse and lasted longer (this is quite usual, by the way)

5. Your husband is resistant to the idea of eating gluten free.

So once your sort your way through these conflicting facts, you must decide whether a diagnosis is necessary for your family (and that includes your husband since he is not onboard with this idea). You know that without a diagnosis, if you go gluten free you will both improve and probably fully recover. Perhaps if your husband sees this he will get onboard. You also know that you will both be very sick if you gluten yourselves for three months. And the bummer of it is, at the end of those three months your testing could possibly still be negative; you may both be non-celiac gluten intolerant. I have forgotten, so please remind me if you had the genetic testing done and if either of you carries a celiac gene. Sometimes a doctor will diagnose based upon the gene, the symptoms, and recovery on the gluten free diet.

I am sorry to not be of much help, but I thought I would just set out the facts in bullet form to help you work your way through to a decision.

Good luck and cyber {{{{hugs}}}}

1

Share this post


Link to post
Share on other sites

Thank you for your response. I know that my frequent posts must be irritating. I just feel like I am against the world.

We haven't had the genetic test done yet but I just sent that request to a nutritionist I will be meeting with. My doctor has me going to see her instead.

0

Share this post


Link to post
Share on other sites




Would you mind taking a look at my results??? I think they are absolute worthless negatives but wondering what the last one is...

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
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined