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Update And Venting

SunnyDyRain

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SunnyDyRain Enthusiast
SunnyDyRain
Posted

Hey all, I've been away for a while. Life has been crazy I went on a cruise earlier this month (didn't get glutened once... Yes Carnival Cruises are safe! )

Now I'm back and back to doctors in force. I went to my GP and she ran alot of tests. I am low on folic acid, and what I concider low on B12 (will be calling her about that tomorrow). My Celiac tests came back negitive so I'm adhering to the diet! (Gold star for me!)

However she sent me to a Gastro and a Derm. The Gastro is worried about my continued D even though I am on the diet and testing "clean" for gluten. I have to have a colonosopy on Wednesday :( She is testing me for some sort of colitis that is common in people with auto immune diseases. Bah! She is not doing a endoscopy and or making me do a gluten challenge... thank god!

The Dermatologst was looking into my hair loss, but now he is worried about Vitamin C deficency due to hair loss and rough skin.

So as my doctor ruled out celiac, seems like the specialists are finding ways to blame it on celiac 14 months after I stopped eating gluten.

I just sort of feel frustrated, I say "celiac disease" and they blame that for all my problems. I'm really feeling as if none of them are really looking outside of the Celiac box.

I really am much more than a "Celiac Pacient"!!

Oh, today the Derm asked what sort of medications I was taking for Celiac Disease... i almost laughed until I realized he was prolly a med student and it's not nice to laugh at med students as they are really just learning.

Ok that's the end of rant.. i welcome comments and ideas!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I am glad you had a good safe cruise but it is too bad you are still struggling with issues. The only thing that struck me was the note in your sig that said you are lactose intolerant. Could you be casien intolerant and not lactose? Casien is in a lot of 'nondairy' items and in many dairy replacement cheeses and that sort of thing. Casien intolerance is pretty common with us and that would be the first thing I would look for along with an intolerance to soy, also common with us. You may have already eliminated these as issues but figured I would mention them as both could cause continued GI distress even when gluten-free.

RiceGuy Collaborator
RiceGuy
Posted

Well, all I can add is that I think you're right about the B12 deficiency, since you mentioned the hair and skin problems. You can't overdose on B12, so I say go ahead.

pele Rookie
pele
Posted
Oh, today the Derm asked what sort of medications I was taking for Celiac Disease... i almost laughed until I realized he was prolly a med student and it's not nice to laugh at med students as they are really just learning.

I was chatting with a Chiropractor/acquaintance recently and mentioned celiac disease. She, too, asked me about the meds. I saw her a few days later and she had obviously looked it up and was embarrassed. I'm happy she is better educated now!

Is your colonoscopy to check for microscopic colitis? I was just reading Dr. Fine's essay on enterolab and he says 4% of celiacs have it, and it is a major reason for continued D.

sickchick Community Regular
sickchick
Posted

I am off of EVERYTHING (including vinegar, soy lecithin, soy, nightshades, carageenan, potatoes)

and I am still struggling with chronic 'D'

I actually ordered Dr Fine's Microscopic Colitis stool test but it's been sitting on my table for like a MONTH! :lol::ph34r: I am so bad I need to DO IT and send it in already... trying to psych myself into doing it HAHAHA

Good luck to you.

Oh and for my gi trouble I eat psyllium every day. Metamucil plus Calcium. I get the pills.

lovelove

SunnyDyRain Enthusiast
SunnyDyRain
Posted
  • Author

Hey everyone, I had a colonoscopy yesterday.... my colon looks stunning (got the pictures to prove it!) however... i have inflamation and an ulcer in my ileum!

From what i have read does that mean Crohns Disease? :(

Anyone have any experince with this?

I have to wait until the end of the month for the follow up, but this wait is killing me! I'm so worried about this!

Jestgar Rising Star
Jestgar
Posted

I don't think one ulcer is worrisome.

I wanted to tell you that when I stopped eating soy, my hair stopped falling out, and finally, after cutting back to only vegetables and meat, my bowel movements are somewhat normal. You may need to investigate other foods (sorry :( )

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gfpaperdoll Rookie
gfpaperdoll
Posted

yes, be careful about getting labeled with something like Crohn's. A friend of mine was misdiagnosed with Crohn's for years - she really had celiac disease - DQ8 & DQ2 & positive thru Enterolab. she said her "Crohn's" was gone at day 5 of the gluten-free diet...

Are you eating any gluten-free grains? That could be a problem for you, also dairy & soy. Look into the SCD diet... I would totally be looking at your diet as the cause of your problems? Are you eating a lot of white potatoes? eggs? nuts? just a few of the common problems... I would cut back to no processed foods.

also, are you sure you are totally gluten-free including skin cream, & all personal care products? Do you live in a house that is gluten-free? Are you on any meds or vitamins that you have not checked?

Hope you are better soon.

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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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