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

Problems arising with celiac


Hannaw

Recommended Posts

Hannaw Newbie

I'm not sure if I'm doing this right. But I have a couple questions hopefully someone can help answer. I'm 15 years old, female. And have been facing problems for many months. I was just finally diagnosed with celiac about a month ago. Since then I have been on strict gluten free diet, due to how severe it is. I've been breaking out in hives and red splotches on my skin. Also have had extreme appetite loss this past couple weeks. Anyone experience anything similar or have a suggestion for what's goin on or what to do? It would be very helpful(:


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



Celiac.com Sponsor (A8-M):



Jmg Mentor

Hello Hanna and welcome! :)

You've found a great site, there's lot's of support and info available here, mostly from people with far more knowledge than myself. I'm sure you'll get some useful responses. 

First off, don't worry. You are only just starting your healing process so you have lots of recovery ahead, it will be mainly up, but sometimes down. The good news is your young, you discovered this early and you will feel better in the days ahead. 

For me, my skin improved after going gluten free but it didn't resolve my issues. I subsequently found that dairy had a big impact on my skin, lot's of celiacs find this as the intestinal damage can affect the body's capacity to handle dairy.  So if you do eat dairy you may want to consider trying cutting it out of your diet to see if it has any effect. 

There are other food intolerances which may also be an issue, once you cut out gluten they can become apparent. Best way to identify those is by keeping a food diary and going on an exclusion diet then adding them in one by one. Hopefully you've seen a dietician since your diagnosis, they could advise you further on this to make sure you don't miss vital nutrients whilst excluding foods.

Finally, I know you say you've been strict gluten-free, but do consider the chance of being glutened, its possible that there's a tiny amount your reacting to, perhaps from using old cookware or chopping boards. As you progress on the GD diet you may become more sensitive to ever smaller amounts of gluten. Something to consider anyway. 

I'm sure there will be further responses but you should also look further on this site and also check out the newbie thread here:

All the best!

Gemini Experienced

Hello Hanna!

I have the same problem with hives and red splotches sometimes so understand your frustration.  Do you have any seasonal allergies? Mine are triggered by my allergy to mold and now that it is extremely humid here, its not a good combination.  I have to stay in the air conditioning.  The problem with hives is that there are many causes so figuring it out can be a bit of a trial.  Here are some other reasons for the problem......

You can have hives just from having autoimmune disease, which obviously Celiac is.  I started having a problem about 2 years ago and I had been gluten free for 9 years by then.  So this can happen at any stage of the game.  It could just be that you are healing but a bit stressed out by it all so you popped with hives. Stress...another huge trigger for hives.

Open Original Shared Link   OK....I know you are 15 years old and I don't want to make your head spin but this link is a good one to keep bookmarked in case the hives problem becomes worse or you cannot find relief.  It is a somewhat associated problem with celiac Disease but not everyone has the problem. This is just information for you to read and keep in mind , along with your parents. You sound like an intelligent young lady so I am sure you would want to know all the reasons hives can occur to figure it out.  The doctor who wrote this article has Celiac and has been a contributor on this site before.

I would suggest that, if you haven't done so already, try using Children's Benadryl at night, before you go to bed.  I mean the liquid one, which is gluten free, or the fast melts.  I use the liquid form myself and yes, at my age of 57, I use the children's version. Benadryl generally makes you a little drowsy so if you use it before bedtime, then you can get a good night's sleep and the drowsiness won't bother you as much during the day.  I wouldn't take it and go to school because you might need a nap.  ;)  The children's version doesn't make me as drowsy as the adult version. I use the brand name Benadryl because I know that it is gluten free.  The antihistamine will help control the hives....makes them go away faster.

The appetite loss can also be from many things but when reading up on the link I gave you, they mention gastro symptoms as part of if so keep that in mind when talking to your parents or doctor.  You just may not be hungry due to all the changes going on with your diet and trying to heal.  I am sorry you are having this difficulty but it most likely is temporary so do not be discouraged. One month is a very short time in the healing process so things will get better as time passes. 

I hope this helps.  Any questions, just keep asking!

Archived

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

  • 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 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.

    2. - Jane02 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.

    3. - 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.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams 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.

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

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748

    Nicolah
    Newest Member
    Nicolah
    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

    • knitty kitty
      @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
      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! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.