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

Paranoid Or Smart?

Emily Elizabeth

Recommended Posts

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted

I was diagnosed with celiac disease on Tuesday 5/15/07. I started the gluten free diet right after my final blood test on 4/27/07. I am feeling better, but still have symptoms and some days are significantly worse then others. I am very paranoid about hidden glutens and am starting to wonder if I am also allergic to something else as well. Is this normal to have good and bad days during the healing process or is something probably causing the changes? I regularly feel dizzy when I don't eat (every 1.5 hours) and have the pregnant look at the end of the day, but my stools go from solid to diarrhea randomly (seemingly). Is it crazy to cut out all dairy products, nuts, wine, eggs, etc. this early along to find out if I am allergic to them?

Also, I read about people touching gluten and then getting sick. Can I not bake for others with wheat flour anymore for fear of getting sick?

I can't wait to start feeling better and want to make sure that I am doing everything I can to do so, without going insane or being overly paranoid doing it! Any advice would be much appreciated!

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Emily E:

It takes some time to heal, and you are extremely new to the diet. You need to be patient. In some adults it can take up to two years to completely heal.

It would be wise to eliminate diary for a while and then reintroduce it after some healing time. Just stick to the gluten and the dairy for now and if after several months, you don't see improvement then you can do an elimination diet one thing at a time so you can identify what you may be reacting to.

It may take several months before you see significant improvement. Be diligent and you will get better soon.

Good luck

PS: reading as much as you can from this site will help you more than anything.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
  • Author

Thanks so much. I really appreciate your advice. I will calm down and stick to the dairy and gluten for now. I am so thankful that this is normal and I don't need to watch everything else as well. I was just starting to feel better (mentally) until I started to question other allergens. I am positive again! Thanks!

Lisa Mentor
Lisa
Posted

I am not sure if you have been reading here, but I wanted to add some suggestions.

Make sure you have a new chopping board, new wooden spoons, toaster and throw away you scratched teflon pans. These are places where gluten can hide.

You also must check your make-up, lotions, shampoos, lip sticks, in other words, anythings that can find it's was into your mouth.

And find youself some gluten free bread mixes, it will soften you gluten free impact.(but not baked in the old gluten pans)

Hope this helps.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
  • Author
I am not sure if you have been reading here, but I wanted to add some suggestions.

Make sure you have a new chopping board, new wooden spoons, toaster and throw away you scratched teflon pans. These are places where gluten can hide.

You also much check your make-up, lotions, shampoos, lip sticks, in other words, anythings that can find it's was into your mouth.

And find youself some gluten free bread mixes, it will soften you gluten free impact.(but not baked in the gold gluten pans)

Hope this helps.

I have been reading, but it seems that I learn something new everyday. I never would have thought to get new wooden spoons or a new toaster. And I especially wouldn't have thought that my make-up could have gluten in it! I now have an excuse to buy new things for the kitchen! My baking cabinet and cookbooks are covered in flour. I wish I could get new cabinets! Hopefully a good scrubbing will do the trick. Thank you very much. I'm going to bake a loaf of gluten free bread now. Or at least attempt it.

mftnchn Explorer
mftnchn
Posted

Hi,

Hang in there, it does get easier! Yes, you have to worry about fixing gluten containing foods for other people. Flour gets in the air and you can breathe it in even if your are gloved and/or wash your hands diligently.

I had a lot of bloating AFTER going gluten-free but that has improved a lot now (gluten-free for one month).

The ups and downs I had look like they are going to resolve since I discovered my hair products had gluten. I had looked at them earlier but didn't understand all the chemical language. Finally I did a search online and then when it was still not conclusive, I wrote to the company and found out all their products have gluten. (Nioxin)

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
  • Author
Hi,

Hang in there, it does get easier! Yes, you have to worry about fixing gluten containing foods for other people. Flour gets in the air and you can breathe it in even if your are gloved and/or wash your hands diligently.

I had a lot of bloating AFTER going gluten-free but that has improved a lot now (gluten-free for one month).

The ups and downs I had look like they are going to resolve since I discovered my hair products had gluten. I had looked at them earlier but didn't understand all the chemical language. Finally I did a search online and then when it was still not conclusive, I wrote to the company and found out all their products have gluten. (Nioxin)

I have been reading books on celiac disease and none of them have mentioned Nioxin. So that is very helpful! Of course the books I have been reading are cook books. Thanks again. That is very helpful. This is a great forum!

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

Celiac.com Sponsor (A8-M):


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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

      @Jmartes71, Sorry you've been feeling so poorly. Are you taking any medication to treat the SIBO? Are you taking any Benfotiamine? Benfotiamine will help get control of the SIBO. Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks? Carbon Monoxide poisoning...
    2. knitty kitty
      - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States. In European countries, different cooking methods and longer fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat. Gluten content can...
    3. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound...
    4. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals. Dietary changes (low carb/paleo) may be beneficial for you. Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet? It's harder to get all the vitamins needed from a gluten free diet. Gluten containing products are...
    5. Caligirl57
      - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant. I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,085
    • Most Online (within 30 mins)
      7,748
    kk007
    Newest Member
    kk007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • knitty kitty
      New issue

      By knitty kitty · Posted

      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      Blood Test for Celiac wheat type matters?

      By knitty kitty · Posted

      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      Severe severe mouth pain

      By trents · Posted

      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      Severe severe mouth pain

      By Caligirl57 · Posted

      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • 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.