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Just Want To Help My Boy!

Peta

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Peta Explorer
Peta
Posted

I feel so frustrated!

I think my 10 year old may have celiac.

I took him to the doctor and asked for him to be tested...which she did.

Although the antibodies came back normal, the gene test came back all positive, and his bloodwork has some areas not in normal range.

He was referred to a large hospital for a biopsy. His appointment to discuss and then book this biopsy is not until February. I tried to get it earlier but the hospital states that only my doctor can push things forward.

Now, along with all his other symptoms, he has developed nose bleeds. I looked them up and noticed that they too can be associated with celiac due to lack of Vitamin K.

He is underweight, pale, tummy pains (although not all the time), dry eyes and lips.

I don't want to put him on a gluten free diet before diagnosis as I am not a doctor and do not know that there may not be another problem with him. I don't want to make that decision, and then find out that he had another problem.

Has anyone else had problems with nose bleeds associated with Celiac?

Peta

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Guest nini
Guest nini
Posted

I used to get nosebleeds all the time. And since going gluten-free haven't had them.

Unless they are planning on doing a biopsy (which with inconclusive bloodwork they probably will) and he needs to be eating gluten for biopsy. There is no other medical reason why NOT to try the gluten-free diet. The gluten-free diet can be a very healthy diet and if it helps great, if it doesn't help it won't affect other testing for other health concerns.

My daughters blood work was negative, and we DID NOT do the biopsy, but instead tried the diet and all of her health issues went away very quickly. She was 3 at the time. We suspected Celiac because I had just been positively diagnosed with it.

After all testing is done, try the diet regardless of test results.

plantime Contributor
plantime
Posted

It's the time of year for nosebleeds. My daughter and I get them from the dry air. You might want to try a vaporizer or humidifier, they worked wonders for us. Also, if you think your child is anemic (and your description of him certainly suggests it), you can start him on a vitamin supplement. A liquid one or one that goes under his tongue to dissolve would be easier for his body use. You sure don't need to wait for a test or a doctor to do that, it won't hurt any celiac tests.

Jestgar Rising Star
Jestgar
Posted

Can you ask to have him tested for vitamin deficiencies?

GlutenWrangler Contributor
GlutenWrangler
Posted

February is a while away. It's too bad your son has to spend the holidays suffering. He needs to continue eating gluten for the biopsy to be accurate. If you are going to go ahead with the biopsy, I would talk with your doctor about maintaining your son's health until the day of the biopsy. I agree that testing for vitamin deficiencies might be a good idea. You just don't want to skew the results of the test. Hopefully your doctor will be helpful in this matter. Good luck.

-Brian

Peta Explorer
Peta
Posted
  • Author

Thankyou for your replies.

I have rung and made an appointment with his doctor as I agree that I won't let him go on like this til February. I am insisting that his biopsy be scheduled earlier.

I will ask about the testing for vitamin deficiencies.

I have decided that as soon as he has had his biopsy I will start him on Gluten-free regardless... as you said, it certainly won't hurt and may make a world of difference.

THANKS AGAIN

Peta

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    • 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

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    • 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.
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