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
      104,365
    • Total Posts
      920,552
  • Topics

  • Posts

    • 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. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined