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Npealer

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Npealer Rookie
Npealer
Posted

Hi All,

I hope someone can point me in the right direction or has had some similar symptoms. I was diagnosed with Celiac Disease in Feb 2011 and I have been on a gluten-free diet ever since. I am still having problems and I am not really sure if they are all related to my celiac disease or maybe something more. In the past 6 months I have had to consistently deal with Insomnia, headaches, dry skin, hair loss, muscle aches, occasional numbness in my fingers, shortness of breath and slight weight gain (5lbs) <-- I know not much but still, dry eyes, and wierdly enough it seems like my skin is thinning. I feel like the smallest thing will leave me scratch that takes forever to heal (like an older person). I'm only 33 yo and I am tired of feeling like crap even afer be gluten-free. Anybody go thru something similar? I have an email out to my doc to see about all these symptoms I have been experiencing. She diagnosed my celiac disease relatively quickly so I can only hope she will continue to be agressive in treating me. Thanks in advance

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GlutenDude Newbie
GlutenDude
Posted

I know this is the last thing you want to hear...but you have to be patient. It took me a few years to start feeling better and five years later, still struggle. And I am as careful as they come. I would get another endoscopy and see if your intestines have healed at all.

Good luck and keep us posted.

Gluten Dude

missmellie Newbie
missmellie
Posted

Hi! Has your thyroid been tested? Having a problem with thyroid is pretty common with celiac and several of your symptoms could be related to underactive thyroid. I have to agree with Gluten Dude about being patient. We all WANT to heal quickly, but our bodies don't always do what we want, do they? Also, it's possible that your gluten sensitivity has caused other problems to arise. Over time, untreated gluten sensitivity can make someone become intolerant to dairy and soy and other things as well. At least, that's what my doctor told me and it's certainly true in my case.

AVR1962 Collaborator
AVR1962
Posted

It is a good idea to have the thyroid checked and if that is not the problem look at supplements. Your body might not be getting all the nutrients it needs to feel better. Insomnia is a real good indicator that your body needs something more. Due to the hair issues, again do get the thyroid checked because hair loss in one symtom, you could benefit from BioSil drops, zinc and/or Primrose oil. Healing issues- take a look at zinc and look up vit K to see if that fits you. Numbness in the fingers, if not thyroid, could be B12. Fatigue could be iron, d or magnesium or all 3. Muscle aches, depends on whaty you are dealing with.....spasms- magnesium and potassium; hard muscles like you ahve just ran- Omega 3,6,9. All of these vits are common for Celiacs to have trouble with.

dilettantesteph Collaborator
dilettantesteph
Posted

I am a super sensitive celiac. I had to go on a whole foods diet to eliminate all symptoms.

Skylark Collaborator
Skylark
Posted

I vote for thyroid too. Dry skin, hair loss, muscle aches, weight gain, and slow healing are classic hypothyroid symptoms.

Ask your doc if she'll test TSH and make sure she knows the modern reference range is 0.5-2.5. Some labs still don't flag TSH over 2.5 as abnormal.

Npealer Rookie
Npealer
Posted
  • Author

Thanks everyone for your responses. I went in to see my doc today and she is retesting my thryroid (had it done in Feb 2011 with normal results) She is also testing for other vitamin difiencies. I have always been borderline anemic my whole life so I am sure that may have something to do with it. Now it is a wait and see. I ended up walking out of my pharmacy $80 poorer this morning LOL

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      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! 
    • 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. 
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