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

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. trents
      - trents replied to Bebygirl01's topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found...
    2. Bebygirl01
      - Bebygirl01 posted a topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those...
    3. Scott Adams
      - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than ...
    4. knitty kitty
      - knitty kitty replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1. Thiamine is needed in the immune response and production of antibodies. Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease. Thiamine can be destroyed by sulfide...
    5. knitty kitty
      - knitty kitty replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      8

      Increasing symptoms after going gluten free

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products. We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life. Sudden weight gain (or weight...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,008
    • Most Online (within 30 mins)
      7,748
    Kateobrien1313
    Newest Member
    Kateobrien1313
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names. Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below? NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn. Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to: Wheat -Alpha Gliadin Gluten- 69% Rye - Secalinin gluten-30-50% Oats-Avenin gluten -16% Barley-Hordein Gluten -46-52% Millet-Panicin Gluten-40% Corn-Zien Gluten -55% Rice-Orzenin Gluten-5% Sorghum-Kafirin gluten-52% and Teff-Penniseiten Gluten 11%.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than methylmercury. Its half-life in the blood is about 7 days, compared to methylmercury, which can persist for months. The dose of ethylmercury in vaccines is far below the threshold known to cause toxicity so would not require chelation.
    • knitty kitty
      Vaccines

      By knitty kitty · Posted

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      Increasing symptoms after going gluten free

      By knitty kitty · Posted

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
×
×
  • Create New...