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

Ever Changing Symptoms Of Celiac

Carla H

By Carla H
in Coping with Celiac Disease

Recommended Posts

Carla H Newbie
Carla H
Posted

I was diagnosed gluten intolerant in July/August 2011 and started to eat gluten free at that time. They ran blood work late September which "most likely" indicated I was celiac. They told me the only certain way to be sure was to start eating gluten again for a month at least and do the blood work/biopsy to be sure. I really didn't want to put my body through even more pain so opted to consider myself celiac with the support of doctor and began this journey.

The big question I have is new symptoms that creep up. I normally had the stomach issues with pasta, bread, etc. so I avoided those foods. Now that I'm told to eat gluten free, and really try to but its in everything and sometimes I've made mistakes.

So I've had new issues come up from a new rash on my legs and arms that is unbearable to aches and pains throughout my body and just overall not feeling well. is this normal or could I possibly have yet another issue. I am asthmatic and allergic to peanuts and most fish although since eating gluten-free my asthma has been much better, go figure.

Anyone else deal with new problems after their diagnosis??

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

My son's asthma completely went away when he went gluten free. He has had severe asthma his whole life. Go figure. All that prednisone and antibiotics and inhalers were for nothing.

Yes, you can become increasingly sensitive to gluten. This sounds like what is happening to you. If your rash is Celiac DH, you will have to limit iodine in addition to watching for trace gluten. This rash is extremely sensitive to gluten and iodine. Your other symptoms of generally feeling really unwell are also consistent with what we call a "glutening." Your body will present you with a myriad of symptoms and often they are not recognized as being a result of gluten until you have started being gluten free and then you begin to make the connections between strange symptoms and episodes of glutening.

Be sure you read all labels twice and get rid of any gluten in your kitchen if you can. Pots, pans, toasters, kissing someone who eats gluten, touching gluten food and then touching your own food. All of these can "get" you. Be sure not to use wheat flour or allow it to be used in your home. You can inhale the suspended particles of flour and become very ill when they are inhaled and make their way to your stomach. I learned all this the hard way. I had read about cross-contamination but didn't believe I would be that sensitive. Indeed I am. So I just wanted to make you aware of how awful even traces of gluten can make you feel. Hope you feel better soon.

Carla H Newbie
Carla H
Posted
  • Author

Thanks so much for the input, was to the doctor today for newest rash (not the DH but she said Celiac can"present" in different forms. They now want me to go to endocronlogist they suspect I may have thyroid issue on top of everything else plus see a nutritionist as I've dropped of bunch of weight not eating gluten. Who knew eating gluten would put weight on? but since I'm gluten-free now I've dropped weight too quickly.

I figured the toaster was probably an issue but the pans?? can't I just clean really and not cook gluten in them going forward? I still have gluten-free eaters in the home but mostly we cook gluten-free anymore. too much of a bother to cook two separate meals.

AVR1962 Collaborator
AVR1962
Posted

I was diagnosed gluten intolerant in July/August 2011 and started to eat gluten free at that time. They ran blood work late September which "most likely" indicated I was celiac. They told me the only certain way to be sure was to start eating gluten again for a month at least and do the blood work/biopsy to be sure. I really didn't want to put my body through even more pain so opted to consider myself celiac with the support of doctor and began this journey.

The big question I have is new symptoms that creep up. I normally had the stomach issues with pasta, bread, etc. so I avoided those foods. Now that I'm told to eat gluten free, and really try to but its in everything and sometimes I've made mistakes.

So I've had new issues come up from a new rash on my legs and arms that is unbearable to aches and pains throughout my body and just overall not feeling well. is this normal or could I possibly have yet another issue. I am asthmatic and allergic to peanuts and most fish although since eating gluten-free my asthma has been much better, go figure.

Anyone else deal with new problems after their diagnosis??

Yes, after I went gluten-free, my muscles and bones ached and still do from time to time now. I had the stiffest neck for a long time. Since diagnosed I have had problems with the planter's faciitis in my left foot, podiatrist said that with celiac he was not surprised as it effects the muscles, joints and connective tissues. I have been taking extra magnesium, potassium, and manganese to help my muscles. The supplements have eased my problem but they still are not gone.

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. par18
      - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free...
    2. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    3. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    4. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    5. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • par18
      IBS-D vs Celiac

      By par18 · Posted

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
×
×
  • 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.