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Disappointed With My Doctor Visit Today

kimis

By kimis
in Doctors

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kimis Collaborator
kimis
Posted

My pcp sent me back to my gastroenterologist because I am still deficient in Vitamine D even after supplementing with 5000 IU twice a day. I have been gluten-free since April 2008 and he thinks I'm either eating hidden gluten (I don't think so) or I might need to go on steriods cause of some reason I don't really understand. He gave me a bloodwork slip for.... Comp.Metabolic Panel w/eGFR, Celiac Disease Comprehensive Panel w/ reflex, CBC w/ Diff, PT w/ INR, Ferritin and Folic Acid. I walked out of the room a bit confused, but I figured I would get the bloodwork done and just go from there. He also said he might want to do a second endoscopy to see if I have healed. I don't understand why I could have an absorption problem if I have eliminated gluten. I also have Hashimoto's and take 65mcg of cytomel and 25 mcg synthroid. My endocinologist wants me to stop taking the synthroid to bring my TSH back in to normal range because it is too low, even though I still have hypothyroid symptoms. I realize I may be giving too much info here, but you never know what might be important info when asking for help and opinions.

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ravenwoodglass Mentor
ravenwoodglass
Posted

You actually, in my opinion, have a pretty good doctor there. He is doing what he should be doing. Are you still having any symptoms like D, fatigue, brain fog etc? Are you being careful to avoid any chance of cross contamination and have you checked to make sure your scripts are gluten free? It is appropriate for him to send you back to the GI and redoing blood work to check and see if you have gluten sneaking in or perhaps even, heaven forbid, refractory celiac. I know you must be tired of doctors and tired of not feeling well and I hope they can get to the root of what is still causing your malabsorption. You could also be dealing with perhaps another intolerance like to soy or dairy that is contributing to the problems.

mushroom Proficient
mushroom
Posted

It is good that you have a doctor who is willing to follow up on these things for you to make sure you are enjoying the best possible health and track down any potential problems. I think you will just have to be patient and see what your blood tests show (do get copies for yourself of your results), and see where you need to go from there. :) Failure to absorb vitamin D is a bit of a problem because it is needed for so many functions of the body, not the least of which is bone health. Getting to the bottom of this is important.

kimis Collaborator
kimis
Posted
  • Author

You actually, in my opinion, have a pretty good doctor there. He is doing what he should be doing. Are you still having any symptoms like D, fatigue, brain fog etc? Are you being careful to avoid any chance of cross contamination and have you checked to make sure your scripts are gluten free? It is appropriate for him to send you back to the GI and redoing blood work to check and see if you have gluten sneaking in or perhaps even, heaven forbid, refractory celiac. I know you must be tired of doctors and tired of not feeling well and I hope they can get to the root of what is still causing your malabsorption. You could also be dealing with perhaps another intolerance like to soy or dairy that is contributing to the problems.

Refractory celiac?.....I think he said that. I'm gonna look that up cause I think that is new to me. Yes.....my brain is uber foggy...hahahaha

ravenwoodglass Mentor
ravenwoodglass
Posted

Refractory celiac?.....I think he said that. I'm gonna look that up cause I think that is new to me. Yes.....my brain is uber foggy...hahahaha

Refractory is when the damage from celiac doesn't heal on the diet. If your antibodies are still high then you are getting gluten from somewhere so do be sure to get copies of the bloodwork. Gluten can be sneaky and to stop the antibodies some of us need to be really strict avoiding it in toiletries as well as stuff like having our gluten eating significant others brush teeth before kissing and avoiding it in 'safe' forms like distilled gluten in alcohol and vinegars.

  • 3 weeks later...
wjp Newbie
wjp
Posted

Just to let you know Synthroid cannot promise that their product is gluten free. I just went through this myself. Been gluten free since 01/10 and my thyroid medicine was switched 04/10 to Synthyroid from the generic. Started in last June, started having vertigo and dizziness off and on up to this past April when I learned that it was possible Synthroid could be getting cross contaminated. Levoxyl (King Pharmacy) states their item is gluten free and I switched 4/16. Boy have things improved. I could tell within 3 days. No more dizziness. So maybe this could prevent the Vitamin D from absorbing. Just a thought. I don't know about Cytomel but I would check on that too.

kimis Collaborator
kimis
Posted
  • Author

Just to let you know Synthroid cannot promise that their product is gluten free. I just went through this myself. Been gluten free since 01/10 and my thyroid medicine was switched 04/10 to Synthyroid from the generic. Started in last June, started having vertigo and dizziness off and on up to this past April when I learned that it was possible Synthroid could be getting cross contaminated. Levoxyl (King Pharmacy) states their item is gluten free and I switched 4/16. Boy have things improved. I could tell within 3 days. No more dizziness. So maybe this could prevent the Vitamin D from absorbing. Just a thought. I don't know about Cytomel but I would check on that too.

Thank you for the info. I just stopped taking Synthroid and I am doing a combo of Naturethroid and Cytomel. I am going to call about cytomel today.

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Roda Rising Star
Roda
Posted

Last I knew cytomel was gluten free. However, I haven't taken the brand name in awhile. Paddock and Mylan make a generic. I have taken both and am currently on the Paddock. I also take generic synthroid, I take Mylan in that too.

mamaw Community Regular
mamaw
Posted

65 mcg of cytomel seems like a lot .. Do you take it all at once? It's all T-3 so you need to be dosing that out over the day.. I took 35 mcg & when I went to another doctor he said no wonder I felt high, that 35 mcg was a hefty amount & it was like SPEED to the body....

On Yahoo groups there is a wonderful support group : the thyroid group".. After four years of hell from synthroid I'm finally getting some life back.. And synthroid is not guarenteed to be gluten-free...I'm now on Nature-roid , it has everything the normal thyroid needs. I been thyroidless for four years RAI...

hth

mamaw

kimis Collaborator
kimis
Posted
  • Author

65 mcg of cytomel seems like a lot .. Do you take it all at once? It's all T-3 so you need to be dosing that out over the day.. I took 35 mcg & when I went to another doctor he said no wonder I felt high, that 35 mcg was a hefty amount & it was like SPEED to the body....

On Yahoo groups there is a wonderful support group : the thyroid group".. After four years of hell from synthroid I'm finally getting some life back.. And synthroid is not guarenteed to be gluten-free...I'm now on Nature-roid , it has everything the normal thyroid needs. I been thyroidless for four years RAI...

hth

mamaw

How much Naturethroid do you take and how do you dose it throughout the day? I tried to do just the cytomel and I ended up having joint pain so I added some Naturethroid in for the T4 and it took most of the joint pain away. 65 is a lot! I take 50mcg in the morning with a 1/2 grain of naturethroid and I take t other 15mcg spread out throughout the day. I do not feel high on the cytomel. I have experienced weight gain on it which I just don't understand.

mamaw Community Regular
mamaw
Posted

Kimis

I just sent you a private message to talk about this !

mamaw

KatieBauer Newbie
KatieBauer
Posted

Kimis,

I see this problem with my clients a lot. Unfortunately, removing gluten is often not enough to restore the gut. There are certain herbs and supplements that can support your body to rebuild the gut lining, such as marshmallow root, slippery elm, MSM, L-glutamine, licorice root (use deglycyrrhizinated if concerned with high blood pressure). My favorite product is RepairVite by Apex Energetics, but I'm sure there are other good products out there that your healthcare provider could order for you. Also, you may be experiencing inflammation from lifestyle choices, medications, infections and stress which can further intestinal inflammation feeding the vicious cycle promoted by intestinal permeability. The blood work your doctor ordered should indicate whether you are dealing with infections (e.g. candida, parasites, bacterial, or viral). Finally, the other problem I see is that in Celiac Disease our bodies can start reacting to other food proteins as though they are gluten, resulting in the same symptoms as consuming gluten. In your case, upregulating your immune system and continuing the attack on your thyroid, not allowing villi to regrow, etc. You could have your doctor order blood work through Cyrex Labs which is doing some amazing immune system work around this problem. They have a panel that tests other food protein for the potential of them being responded to as gluten. Interesting stuff. Please post what your blood work shows, I'd be curious and it sounds as though others would be too. Good luck!

Katie Bauer, MA, CNE, CH

viviendoparajesus Apprentice
viviendoparajesus
Posted

I thought of Dr. Kharazian's book Why Do I Still Have Thyroid Symptoms: When My Lab Tests Are Normal when I saw your post. Seems like you have the right diagnoses, which seems to be part of the battle since often gluten intolerance and autoimmune conditions are misdiagnosed. I think it is great that you are getting tested - I have had a hard time getting doctors to believe something is wrong with me and to order tests so we can figure out what it is. We have to be careful with any medication prescribed or over the counter since gluten is so prevalent. Another consideration is other common foods that cause problems for those of us with gluten intolerance and cross reactivity and cross contamination. Best wishes!

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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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