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Which Doctor/s to See...

Celiac-in-AZ
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Celiac-in-AZ Rookie
Celiac-in-AZ
Posted

Hi all,

I'm amazed at how many of my health issues have improved since my diagnosis and quitting gluten and a few other sensitivities -- and I'm only four months into this! Neuropathy, pudendal neuralgia, brain fog, ADHD... all gone. 

However, I have two issues that are not improving at all:

1) Instability in hip -- despite months of PT, I don't seem to be able to improve the strength or stability of my wonky right hip.

2) Reflux -- Neither my GI or ENT is sure whether to call it GERD or LPR/silent reflux, but a combo or throat pain and difficulty swallowing, along with post-nasal drip that I don't really feel. I tried a month of religious high-PH diet, H2 blocker, and algetate with no improvement. I'm now three days into using a PPI, which I really didn't want to do. I'm already struggling with Vitamin D and B12. 

So, my question: Do you have one type of doctor you see to quarterback your treatment? I have one naturopath who recommends a zillion supplements to heal the gut, another who preaches patience and keeping it simple, a neurologist who doesn't really see anything relevant, and a GI whose only advice is don't eat gluten. Who do you see to help guide you through complex issues of recovery? 

 

 

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Scott Adams Grand Master
Scott Adams
Posted

I can't answer the doctor question, but did want to comment on your ongoing symptoms. I think you're getting good advice about supplements to heal the gut, and hopefully your are taking broad vitamin and mineral supplements as well. If your hip issue is related to malabsorption caused by untreated celiac disease, it could take months to years to recover, but it may be something else, so you might want to get it checked out if you don't see any improvement over the next few months.

GERD can be caused by additional food intolerance issues, and you may need to keep a food diary and eliminate things one at a time to see if there is connection, for example casein/cow's milk, soy, nightshades, corn, eggs, etc. Be sure that your diet is 100% gluten-free, as this could also cause it, and celiacs who eat out in restaurants often eat trace amounts of gluten.

Celiac-in-AZ Rookie
Celiac-in-AZ
Posted
  • Author

Thanks for the response, Scott. 

At this point, I'm more concerned about ataxia than malabsorption. My Vitamin D and B12 were slightly low right after my diagnosis, otherwise all looked okay. I have not yet found a neurologist I trust to address possible ataxia. 

Good advice about the possible reflux. Other than legumes and occasional nuts, I'm basically on the Autoimmune Protocol because of all the cross-reactivities that showed up on my Cyrex tests. There's a possibility that it's a mold issue, but this is another area where I can't find the right doctor to test things. 

I really wish I had the right medical professional to take a close look at me, but the search goes on.  

knitty kitty Grand Master
knitty kitty
Posted

@Celiac-in-AZ,

Have you been to a nutritionist?  

You may be low in other vitamins and minerals.  If you are low in one or two, you are probably low across the board.  There are reliable tests for B12 and Vitamin D, but no really reliable tests for other B vitamins.  

There's eight B vitamins.  They all work together.  Taking just one B vitamin can throw the others out of whack.  A B Complex supplement should be taken with your B12.

Ataxia is caused by Thiamine deficiency.  Blood tests for thiamine are not accurate.  Thiamine is used inside cells, so blood tests for thiamine don't reflect how much is inside cells.  Thiamine blood tests can reflect how much Thiamine you've consumed in your diet in the past couple of days. Thiamine is water soluble and nontoxic.  High doses of thiamine are needed to correct a deficiency.  With high doses, thiamine can get into cells by passive diffusion.  The World Health Organization WHO recommends taking between 500 and 2000mg Thiamine Hydrochloride per day for several days.  Every one is different and increasing doses should be tried.  Benfotiamine and Allithiamine and Thiamax can also be used.  These are fat soluble forms that get into cells easily so lower doses of these can be taken.  If improvement is seen within hours or a few days, thiamine supplementation should continue for several months.

This is what I used to correct my ataxia.  

Hope this helps!

Celiac-in-AZ Rookie
Celiac-in-AZ
Posted
  • Author

What a thoughtful response, KK. 

I take a lozenge that has B6 and B12, along with folate. May I ask, how did you learn this information about thiamine and ataxia? I'd love to read up on it so I can better understand before asking a doctor or nutritionist about it. (And no, I have not yet been to a nutritionist but am looking for one that understands celiac.) 

knitty kitty Grand Master
knitty kitty
Posted

@Celiac-in-AZ,

I'm a big fan of Dr. Derek Lonsdale.  He and Dr. Chandler Marrs have written a book 

"Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition"

Here's one of his published articles...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Other articles are on Dr. Marrs' website...

https://www.hormonesmatter.com/navigating-thiamine-supplements/

Elliot Overton has written articles there and has videos on YouTube.

https://m.youtube.com/channel/UCFqXidfUsI0vm73xsBMIQdQ

 

I was so severely malnourished I had developed ataxia.  My doctors didn't recognize nutritional deficiency symptoms.  I followed Dr. Lonsdale's high dose Thiamine supplementation and have recovered much.  

I hope you have as much improvement as I have.

Celiac-in-AZ Rookie
Celiac-in-AZ
Posted
  • Author

I will check out all these resources. Thanks again!

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    • knitty kitty
      Seeking advice on potential gluten challenge

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      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
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