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

When Are New Symptoms A Sign Of Healing ?

marciab

By marciab
in Coping with Celiac Disease

Recommended Posts

marciab Enthusiast
marciab
Posted

Is there any kind of time line available ?

I have been thinking that since my body is getting nutrients for the first time ever, that some of my symptoms are a healthy sign. I have eaten junk / fast food all of my life, so my body is really freaking out. :o

But, how do we know ? Is there any detailed info on the healing process ? Like at 6 months you should see "abc" and at 1 year "def" and so on.

Can those with nueropathies feel the body healing ? I was thinking this is why my arms started getting a fluttering feeling after being on the diet for 6 mths. I've had mild numbness in my hands for years.

And my tongue is now a deep red and my lips are a new shade of pink. :D Is this progress or just another food allergy ? :ph34r::unsure:

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

Celiac.com Sponsor (A8-M):


nettiebeads Apprentice
nettiebeads
Posted
Can those with nueropathies feel the body healing ? I was thinking this is why my arms started getting a fluttering feeling after being on the diet for 6 mths. I've had mild numbness in my hands for years.

And my tongue is now a deep red and my lips are a new shade of pink. :D Is this progress or just another food allergy ? :ph34r::unsure:

I caused my own neuropathies by ignoring that little four letter word "malt" in cereal. Took me a long time to develop it, but after eliminating that from my diet it seemed that my muscles would "jump" like the nerves were coming back alive.

As for the deep red tongue and pink lips - probably iron in your system that your body couldn't absorb before! Pink lips are a sign of health, blue and pale lips usually mean deficiencies.

Annette

marciab Enthusiast
marciab
Posted
  • Author

Thanks Annette,

Wow, that is certainly good news. :D That is what I was hoping, but I wasn't sure. My lips have been pale forever and I honestly couldn't rember what the normal color was.

RKB-MD Rookie
RKB-MD
Posted

The neuropathies that you describe would be consistent with hypokalemia (low potassium). As essential nutrients are absorbed in exactly the areas that are destroyed by gluten, the malnourished state can occur. Without seeing your basic metabolic profile (Sodium/potassium/Chloride/CO2/Glucose) it is impossible to definitively state that you were hypokalemic when these symptoms occured.

There is always the possibility that some unrelated issues may be present as well. I don't know your age (advanced age can lead to neuropathies), nor if you have Diabetes Type 1 where neuropathies are possible.

Regarding your lips and tongue. Do things look "normal" but just a more "bright" red? If so, that certainly could be a reduction in anemia. If, however, they are swollen or "glossitic", this could be a sign of continued avitaminosis - specifically a B vitamin defeciency (a special problem for CS as our elimination diet is often B deficient) or an anemia.

stilljoyful Newbie
stilljoyful
Posted

Anyone sleep alot in the beginning? I woke up at 2:30 today still feeling tired.

eleep Enthusiast
eleep
Posted
Anyone sleep alot in the beginning? I woke up at 2:30 today still feeling tired.

I was a sleeping machine -- my semester ended a few weeks or so into going gluten-free and I had a couple of weeks where I decided to mostly heal and rest. I would get nappish immediately after breakfast and sleep in the hammock in the backyard for a while. I think my body was just really using a lot of energy just to start healing.

Now I seem to be able to sleep perfectly normal 7-8 hour nights and, when things are busy and I only get 6 or so, I'm tired, but not anywhere near as tapped out as I used to be on that little sleep. My mornings in general are much much better now as well -- it used to take me multiple hits on the snooze bar just to get myself out of bed. Now I'm just up.

eleep

Aerin328 Apprentice
Aerin328
Posted
Now I seem to be able to sleep perfectly normal 7-8 hour nights and, when things are busy and I only get 6 or so, I'm tired, but not anywhere near as tapped out as I used to be on that little sleep. My mornings in general are much much better now as well -- it used to take me multiple hits on the snooze bar just to get myself out of bed. Now I'm just up.

eleep

Good to hear!

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

Celiac.com Sponsor (A8-M):


marciab Enthusiast
marciab
Posted
  • Author

Thanks for the replies,

My lips are the same color as my finger tips when I squeeze them a little. Is this is a good color ?

The other reason I am questioning this is that the tip of my tongue feels a little raw sometimes when I eat fruit. It showed up for the first time last week. At first it was cantaloupe and then plums. But then it cleared up. Now cantaloupe is fine. :blink: But cherries bothered me today.

I didn't sleep more, I slept less, but wheat makes me sleepy. If you were sleep deprived and now you are sleeping then it would be a good thing.

queenofhearts Explorer
queenofhearts
Posted
Thanks for the replies,

My lips are the same color as my finger tips when I squeeze them a little. Is this is a good color ?

The other reason I am questioning this is that the tip of my tongue feels a little raw sometimes when I eat fruit. It showed up for the first time last week. At first it was cantaloupe and then plums. But then it cleared up. Now cantaloupe is fine. :blink: But cherries bothered me today.

I didn't sleep more, I slept less, but wheat makes me sleepy. If you were sleep deprived and now you are sleeping then it would be a good thing.

Hm, the tongue thing sounds a bit like an oral allergy. Do you by any chance have hay fever? They're often linked. Plant proteins that irritate the tissues... only when raw usually. Ursula knows a lot about them.

Leah

marciab Enthusiast
marciab
Posted
  • Author

Holy Crap !!! I just read the info on oral allergies. I eat everything they listed. Now, what am I going to eat ?? :o

These weren't a problem until recently. I am hoping this oral allergy is just the result of drinking chamomile tea. That's when it all started.

What next ? I am soooo tired of getting new symptoms. When is this going to end ?????????????????

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 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...
    2. Jane02
      - 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.

      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...
    3. 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • 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! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.