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

Slow Recovery After Holidays


gleegan

Recommended Posts

gleegan Rookie

Hi,

I'm new to this forum. I've been reading it for a few months, but have never posted. I'm hoping someone can help me understand what's going on with a very slow recovery I've been going through. I am self-diagnosed Celiac for about 10 months now. None of the doctors even mentioned the possibility of Celiac or gluten intolerance when I had no idea what was going on; but, as soon as I stopped gluten after reading about the condition on the internet, years of me only having "the big D" stopped and I finally had solid stools. The abdominal pain stopped as did the bloating. In short, I have been utterly convinced that this was my problem (and still am).

However, since the holidays when I did cheat and eat some things I should not have had and, since then, I am only having the big D three weeks later (with no solid stools). I have been avoiding gluten during those three weeks, but everything (fruit, veggies, rice) seems to make me sick. It makes me pretty angry because, as you all now, staying on the right diet can be so difficult and I don't understand why eating a piece of pizza and a bagel should make me sick this much after the fact (it has never happened before since I got healthy when i cheated slightly). Is it possible that I've killed all of the villi (I think that's the term) and they need to rebuild? Is this a normal amount of time for it to take? I have been going through a lot of work and financial stress, so maybe this is making my recovery slower. I know I'll never cheat again (or try harder!)!

I know I should have a diagnosis from a doctor, but I have no doubt of what's wrong. It's just freaking me out that this recovery is taking so long. Help!


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



Celiac.com Sponsor (A8-M):



barlabarlabarla Newbie
Hi,

I'm new to this forum. I've been reading it for a few months, but have never posted. I'm hoping someone can help me understand what's going on with a very slow recovery I've been going through. I am self-diagnosed Celiac for about 10 months now. None of the doctors even mentioned the possibility of Celiac or gluten intolerance when I had no idea what was going on; but, as soon as I stopped gluten after reading about the condition on the internet, years of me only having "the big D" stopped and I finally had solid stools. The abdominal pain stopped as did the bloating. In short, I have been utterly convinced that this was my problem (and still am).

However, since the holidays when I did cheat and eat some things I should not have had and, since then, I am only having the big D three weeks later (with no solid stools). I have been avoiding gluten during those three weeks, but everything (fruit, veggies, rice) seems to make me sick. It makes me pretty angry because, as you all now, staying on the right diet can be so difficult and I don't understand why eating a piece of pizza and a bagel should make me sick this much after the fact (it has never happened before since I got healthy when i cheated slightly). Is it possible that I've killed all of the villi (I think that's the term) and they need to rebuild? Is this a normal amount of time for it to take? I have been going through a lot of work and financial stress, so maybe this is making my recovery slower. I know I'll never cheat again (or try harder!)!

I know I should have a diagnosis from a doctor, but I have no doubt of what's wrong. It's just freaking me out that this recovery is taking so long. Help!

Thanks for that posting. I am also not officially diagnosed and am also wondering what the time frame is for recovery. I am basically eliminating all wheat products, such as breads and pizza crusts, bagels , donuts and breakfast cereals. I find that eating gluten free is expensive, as so much of what my children eat has gluten in it. I am also trying to reduce the amount of cow's milk that I consume in milks, cheeses , icecream etc...

My goal is not only to heal the bloating and constipation, but to dramatically reduce my weight which has become a huge issue...no pun intended :huh:

I recall that even as a child I struggled with abdominal bloating and painful gas in my stomach if I ate things like white hot dog buns. It was embarrassing, because I didn't want to be different, and I didn't trust the medical authenticity of the alternative health person that I was seeing. Therefore, since I didn't have an official medical diagnosis, I thought I could afford to ignore the problem.

Well, its a new year, and I am going to go gluten free for 2008 by God's grace. Have lost three pounds so far since Jan 1/08 but I wish theprocess would be faster......

little d Enthusiast

Hi gleegan

Welcome to the board

I too do not have an offical diagnoses from my GI doctor, he wanted to pass me off as having IBS or IBD. When I first started the diet I felt better, did great with losing weight. I could not lose weight eating regular food and I stayed hungry all the time. My GI doctor had told me that he was not conviced that I did not have a gluten problem. But my family Doctor who does not know anything about Celiac Disease has told me that if the diet helps then continue with the diet and go with that. I cheat too on my diet as well. I will go weeks at a time with gluten free and then I will want something that I think that I will be ok with and I will either have "C" alternating with "D" or vise versa and it will take a while before I will feel better again. I think that you just have to give it some time, choose you fruit and veggies that are low in acid. when I am cheating I can't have the baby pickells that I like as a snack at work because it burns my tummy. I think that you will just have to find what works for you on the foods that you can tolerate right now becuase you are still in the process of healing. there are other here that can give you better advise on what to do and what to avoid. Don't worry your heeling might be hindered by your cheating but you will get there again with feeling good and wanting to get out with your friends and family again.

donna

gleegan Rookie
Hi gleegan

Welcome to the board

I too do not have an offical diagnoses from my GI doctor, he wanted to pass me off as having IBS or IBD. When I first started the diet I felt better, did great with losing weight. I could not lose weight eating regular food and I stayed hungry all the time. My GI doctor had told me that he was not conviced that I did not have a gluten problem. But my family Doctor who does not know anything about Celiac Disease has told me that if the diet helps then continue with the diet and go with that. I cheat too on my diet as well. I will go weeks at a time with gluten free and then I will want something that I think that I will be ok with and I will either have "C" alternating with "D" or vise versa and it will take a while before I will feel better again. I think that you just have to give it some time, choose you fruit and veggies that are low in acid. when I am cheating I can't have the baby pickells that I like as a snack at work because it burns my tummy. I think that you will just have to find what works for you on the foods that you can tolerate right now becuase you are still in the process of healing. there are other here that can give you better advise on what to do and what to avoid. Don't worry your heeling might be hindered by your cheating but you will get there again with feeling good and wanting to get out with your friends and family again.

donna

Thanks for your responses, little d and Donna - I appreciate them. It's a real learning curve and I'm glad I have such nice people to learn with. Just as a side note, I have lost 15 to 20 pounds since I stopped eating gluten (that's in only 10 months). I also have had to eliminate dairy because I had ignored the gluten problem long enough that I couldn't take that either. Aside from bouts of small cheating, I am a much healthier person and look much better without the extra weight. I know some people lose weight while eating gluten, but I gained and was always bloated.

dbmamaz Explorer

Just wondering if you're trying some probiotics/acidopholous. Having that much D can so mess with your system, I know when I'm feeling that way, I'd take acidopholous every day and probaby be drinking gatoraide too, for electrlytes - tho i'm sure someone will have something bad to say about gatoraide! I've also seen a few posts where people imply that, once your gut starts to heal, its even more sensitive - like there was a mucous lining protecting it, or your body was compensating other ways or something, so you may be even more sensitive to it now than you were before you quit

hope you feel better soon

gleegan Rookie
Just wondering if you're trying some probiotics/acidopholous. Having that much D can so mess with your system, I know when I'm feeling that way, I'd take acidopholous every day and probaby be drinking gatoraide too, for electrlytes - tho i'm sure someone will have something bad to say about gatoraide! I've also seen a few posts where people imply that, once your gut starts to heal, its even more sensitive - like there was a mucous lining protecting it, or your body was compensating other ways or something, so you may be even more sensitive to it now than you were before you quit

hope you feel better soon

Thank you so much for the advice. I suppose, since you suggested it, that Gatorade doesn't have any hidden gluten. I never thought of that, but will try it. I will also try acidopholous pills. It does make sense to me that I'm less used to gluten now so that the immune system has no idea how to handle it. I appreciate the kind words.

hez Enthusiast

Last year at this time I was in living h***! I had gotten glutened, not by cheating, but by cc. I figured out 3 possible sources. I was sick for 3 months. In month 2, I went back to my doc. Long story short I was probably glutened at all 3 and it shut my body down. The good news was that I actually had some regrowth of villi, I had none by the time of my dx. I do think probotics help. Try that and see if it make a difference. It is expensive but well worth it for me.

Hez


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



Celiac.com Sponsor (A8-M):



gleegan Rookie
Last year at this time I was in living h***! I had gotten glutened, not by cheating, but by cc. I figured out 3 possible sources. I was sick for 3 months. In month 2, I went back to my doc. Long story short I was probably glutened at all 3 and it shut my body down. The good news was that I actually had some regrowth of villi, I had none by the time of my dx. I do think probotics help. Try that and see if it make a difference. It is expensive but well worth it for me.

Hez

Thanks for the reply. Three months! Argghhh! That sounds awful. From CC, too. This is definitely a difficult condition to cope with. You get sick if you cheat, obviously, but the most frustrating is when you're doing your best to be good. It really has turned into a part-time job for me: reading labels, etc.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,862
    • Most Online (within 30 mins)
      7,748

    Aracely
    Newest Member
    Aracely
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Villi damage is caused by celiac disease, which does not happen in NCGS, although some people with NCGS do have elevated antibody levels. Some people with NCGS who have the genes for celiac disease may end up developing celiac disease, so in some people NCGS may be a precursor to celiac disease, but more research needs to be done on NCGS. Both low iron and vitamin D are common symptoms of celiac disease. Also, regarding beer:  
    • Scott Adams
      It’s true that some vaccines contain small amounts of preservatives, stabilizers, or adjuvants to ensure their safety and effectiveness. For example: Thimerosal: A preservative that contains ethylmercury (not to be confused with methylmercury, which is toxic). Most routine vaccines no longer contain thimerosal, except for some flu vaccines in multi-dose vials. Aluminum: Used in very small amounts as an adjuvant to boost the immune response. The amount is far below levels considered harmful, but if you suspect an aluminum allergy, it’s worth discussing with your doctor. Sugar alcohols: These are sometimes used as stabilizers, but they are generally well-tolerated. If you have a known intolerance, you can ask about specific ingredients in each vaccine. Since you mentioned an intolerance to metals and jewelry, it’s a good idea to follow up with allergy testing, as you planned. This can help identify specific metals (e.g., nickel, aluminum) to avoid. Your doctor can then guide you on whether any vaccine ingredients might be a concern. Since the Mayo Clinic has already identified potential allergies, it might be helpful to consult an allergist or immunologist. They can review your medical history, perform tests, and provide personalized advice on vaccines and their ingredients. While it’s important to address your intolerances, it’s also worth considering the risks of not being vaccinated. Many vaccine-preventable diseases can have serious consequences, especially for those with underlying health conditions. 
    • knitty kitty
      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
×
×
  • Create New...