Jump to content

  • 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

Am I Regressing?

Jen H

By Jen H
in Coping with Celiac Disease

Recommended Posts

Jen H Contributor
Jen H
Posted

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
rmmadden
Posted

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
Jen H
Posted
  • Author

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
drewsant
Posted
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
ravenwoodglass
Posted
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
KaitiUSA
Posted

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
Jen H
Posted
  • Author

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
ravenwoodglass
Posted
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
Jen H
Posted
  • Author

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
drewsant
Posted
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
Tigg
Posted
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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,545
    • Most Online (within 30 mins)
      7,748
    PatientOne
    Newest Member
    PatientOne
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.