Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Am I Regressing?


Jen H

Recommended Posts

Jen H Contributor

Hi everyone,

I found out I have celiac disease over a month ago. I've followed the gluten-free diet faithfully since then and I was feeling better after 2 weeks. I am starting to have stomach pain, nausea, brain fog, and exhaustion again and I was wondering if it is normal to have symptoms during the healing process? Did anyone begin to make progress and then have symptoms again?

Jen


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



Celiac.com Sponsor (A8-M):



rmmadden Contributor

Jen,

This happens all the time. I've been gluten-free for 9-months now and I still go up-and-down with the symptoms. Everyone is different blah, blah, blah....you know the drill by now. I'm hoping that as time goes by and my intestine's heal more that I can live without celiac disease occupying my EVERY THOUGHT. That being said I honestly don't believe I'll ever be without some celiac disease related symptoms going on so I just try to make the best of it.

Best of Luck!

Cleveland Bob B)

Jen H Contributor

Thanks, Cleveland Bob. I have been so careful about reading labels I'm becoming paranoid. It took about a year for doctors to figure out my diagnosis, so I guess I can't expect my symptoms to go away overnight. I"m just glad to know that this is a normal part of the process.

Jen

drewsant Rookie
Hi everyone,

I found out I have celiac disease over a month ago.  I've followed the gluten-free diet faithfully since then and I was feeling better after 2 weeks.  I am starting to have stomach pain, nausea, brain fog, and exhaustion again and I was wondering if it is normal to have symptoms during the healing process?  Did anyone begin to make progress and then have symptoms again? 

Jen

<{POST_SNAPBACK}>

I was doing great for about a month, then the last week or so I've had big stomach problems again, and missed parts of 2 days of work, today included. I'm starting to feel a little paranoid as well, or that I really don't have Celiac and it's something else entirely.

ravenwoodglass Mentor
I was doing great for about a month, then the last week or so I've had big stomach problems again, and missed parts of 2 days of work, today included. I'm starting to feel a little paranoid as well, or that I really don't have Celiac and it's something else entirely.

<{POST_SNAPBACK}>

Check diligently for a source of cross contamination or a hidden gluten source. Have you made your kitchen gluten-free or are you trying to cook in a gluten filled kitchen? Make sure you get a new toaster and clean like the health deptartment is coming if gluten containing foods are still in use in your home. It is best for the newly diagnosed to try and avoid fast food places, as a former head chef I can attest to the fact that some food service workers are not all that cooperative about observing the things neccessary for us like changing gloves and wiping serfaces before preparing our food. Don't drink soda out of a speed bar, if you go out for a beverage make it in a can or bottle to be safe. My son kept getting sick whenever he went to play pool, we finally realized it was the speed bar at the tavern he played at. Don't lose heart, contamination is all over out there, I learned the hard way that unless it is labeled gluten-free I need to call the company before I consume. Good luck.

KaitiUSA Enthusiast

I have been gluten free for almost 2 years and it took me a while to get back to normal. I would go a week feeling great and then have a few bad days. I was so up and down for quite some time.

Just make sure everything is gluten free(not only food but products like cosmetics, shampoos, soaps,lotions, etc)

Other than that you just have to give your body some time. Just think about the years of damage and chaos that your body had to go through fighting it. Now your body is healing and it can be a long and hard process. Everyone is different with times it takes for symptoms to go away.

Jen H Contributor

Thanks for the replies. Do you think am I unintentially glutening myself or is my body just taking time to heal? This is probably a dumb question, but why are the soda speed bars potentially harmful? Is it because other sodas have gluten in them and there can be cross contamination? Do you eventually get to a point where you feel healthy almost everyday?

:) Jen


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Thanks for the replies.  Do you think am I unintentially glutening myself or is my body just taking time to heal?  This is probably a dumb question, but why are the soda speed bars potentially harmful?  Is it because other sodas have gluten in them and there can be cross contamination?  Do you eventually get to a point where you feel healthy almost everyday?

:) Jen

<{POST_SNAPBACK}>

It is not just the cross contamination issue, although thats enough, Many fountain mixes are formulated differently from the stuff you buy in the store., most places won't stand on their head for you to read the labels and it's kind of a safe not sorry senario. Also for me I don't know what is in Sanitabs that are used in the 3rd rinse (read they sit in this, it is not rinsed off) and I have always gotten an upset stomach from bar glasses. Take heart though you will feel better, it takes us each different amounts of time to heal but healing will come and this is a great place for advice. I know I have learned a lot from everyone. :)

Jen H Contributor

Ravenwoodglass,

that's funny you mentioned the soda fountain. When I go out to a local bar with my friends I usually get a sprite. Each time I come home with stomach pain. I never put it together. I kept mentioning it to my husband, but we both thought it was just coincidental. I'll have to bring my own from now on.

:) Jen

drewsant Rookie
Check diligently for a source of cross contamination or a hidden gluten source. Have you made your kitchen gluten-free or are you trying to cook in a gluten filled kitchen? Make sure you get a new toaster and clean like the health deptartment is coming if gluten containing foods are still in use in your home. It is best for the newly diagnosed to try and avoid fast food places, as a former head chef I can attest to the fact that some food service workers are not all that cooperative about observing the things neccessary for us like changing gloves and wiping serfaces before preparing our food. Don't drink soda out of a speed bar, if you go out for a beverage make it in a can or bottle to be safe.  My son kept getting sick whenever he went to play pool, we finally realized it was the speed bar at the tavern he played at.  Don't lose heart, contamination is all over out there, I learned the hard way that unless it is labeled gluten-free I need to call the company before I consume. Good luck.

<{POST_SNAPBACK}>

I live alone, and don't have anything in my house tht has gluten to my knowledge. I don't even own toaster, don't eat bread of any kind to be toasted anymore. I've been eating basically just fruits and vegetables, and fresh meat. And gluten-free chocolate, otherwise I'd probably go crazy. Checked my shampoo and soap, and all is gluten-free, and I don't wear makeup, so not getting it there. I'm thinking it may be something else, because I did really well for almost a month. I think i'm going to start keeping a food diary and symptom diary to see if it may be some other food that I have an intolerance to.

Tigg Newbie
Hi everyone,

I found out I have celiac disease over a month ago.  I've followed the gluten-free diet faithfully since then and I was feeling better after 2 weeks.  I am starting to have stomach pain, nausea, brain fog, and exhaustion again and I was wondering if it is normal to have symptoms during the healing process?  Did anyone begin to make progress and then have symptoms again? 

Jen

<{POST_SNAPBACK}>

Wow same kinda guestion I have. I have been gluten-free since MAR 2000. At that time I lived on a small barrier Island in NC. The availablity of just simple luxury foods such as premade sandwich foods, pasta...ect... was VERY limited. Although I never was hungery. Made everything by myself. A yr. and a half ago I moved to a larger city with more available premade foods. Plus noted a change around that time in the safe and forbidden list.

I gained 50 lbs....in 6 months! I look pregnant! BM habbits are approx. 5 lose stools a day.

What have I done wrong? Have the same as you...stomach pain, brain fog and exhaustion. <_<

Anyone can help us.......???? ideas????

Tig

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,199
    • Most Online (within 30 mins)
      10,442

    Tricia01
    Newest Member
    Tricia01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      I just thought I'd update this post. My father has had some issues with his heart rythym and we found giving him an electrolyte drink plus a vitamin D supplement with extra calcium containing food (yoghurt) made a big difference, and very quickly. My own problems with ectopic heartbeats started up again with warmer weather so I thought I'd take a leaf out of his book, and now, for the second time, after just one Phizz Electrolyte Drink, and a dose of vitamin D (Fultium D 800 x 4) with a milkshake, my ectopics disappeared within the hour.   Probably the Phizz drink rather than the D with calcium, but maybe it all helped?  Just mentioning this in case anyone is looking for answers.
    • Russ H
      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
×
×
  • Create New...