Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

When Do I Start Feeling Better Again?


katiekay

Recommended Posts

katiekay Explorer

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???


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



keithceliac2010 Rookie

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

katiekay Explorer

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.

mushroom Proficient

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}}}}

katiekay Explorer

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.

katiekay Explorer

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,182
    • Most Online (within 30 mins)
      7,748

    Portia
    Newest Member
    Portia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...