Still Frustrated

[Walter123]

Hi everyone, been awhile since I posted here; diagnosed over a year ago with celiac disease; I was asymptomatic and went to PCP for dry mouth and feeling of swelling in the tongue; later find out after testing I had celiac disease.

Was told the answer to feeling better was gluten-free diet; I have done this, maybe not 100% perfect, meaning I know some gluten may have cross contaminated its way into my diet, but I always ensure whatever I eat is gluten-free.

I would say I pretty much feel the same if not worse since my celiac disease diagnosis.

Around the same time my thyroid levels were checked and was later diagnosed with Hypothyroid, been taking thyroid medicine; my levels have been high and low, off and on with some adjustment in meds.

Being frustrated, I went to the Cleveland Clinic to get second opinions.  Results were more or less the same just with a bit more explanation.  Along the same time I complained about numbness and cold hands; told I have symptoms of Raynaud's.

The more recent symptom that is the MOST concerning is hair thinning on head and noticeable round patches on different spots on legs.  Been told by the doctors that this all can be from any of the above or the stress and anxiety I have expressed to them.

I have truly never dealt with my symptoms of anxiety and some mild depression; my anxiety is the biggest culprit; is has made me down right physically ill, chest pains, light headedness, nausea and a panic attack that sent me to the ER after thinking I was having heart trouble. 

All this is not typical me; I am 48yoa, active, work two jobs in professional careers; BUT, a ton of family/child issues have hit hard over the past ten years or so; I know this is celiac disease specific site, but I feel many here have faced numerous medical conditions on their journey to get a celiac disease diagnosis; 

I want to feel better, but know these physical symptoms are mounting and one of the most fearful is losing your hair in spots; seems trivial with what some face, but scary when you can't get real answers to know why your body is behaving the way it is.

If anyone can provide some insight or direction based on any similar experiences it's much appreciated..

 

 

[trents]

Walter, are you taking any vitamin and mineral supplements? Have you been checked for anemia?

[Walter123]

My Iron levels were checked and returned within range; I take a multi vitamin Gummy; many of my vitiman levels were checked by Endocrine due to my Hypothyroid; which for the most part are rather normal; they did find my DHEA hormone to be slightly low. 

[RedFacedJock]

For anxiety I highly recommend a combination of Magnesium Glycinate (200mgs), L-Taurine (1000mgs) and L-Theanine (200mgs). Taken twice per day.

Most multi vitamin products usually contain no more than 100mgs of Magnesium and it's usually the poorly absorbed "Stearate" compound, as opposed to the vastly super Glycinate compound.

400mgs of Magnesium Glycinate taken each day can make a dramatic difference.

As for the hair falling out. I can't really say much for that. It may be related to your anxiety or it could just be a natural occurrence from ageing. 

[knitty kitty]

@Walter123,

You should be off all vitamin/mineral supplements six to eight weeks prior to checking for vitamin levels by blood tests, otherwise the test merely measures how much of that vitamin/mineral you've consumed in the previous twenty-four to forty-eight hours.  

Thiamine deficiency can affect the thyroid causing fluctuations in thyroid hormone levels.

Cold hands and feet, and numbness (peripheral neuropathy) are further symptoms of thiamine deficiency.

Hair loss or thinning is also related to thiamine deficiency.

Anxiety and panic attacks are symptoms of thiamine deficiency.

I've had all these symptoms and more due to thiamine deficiency and other vitamin and mineral deficiencies.  Thiamine deficiency shows up first because thiamine cannot be stored for long.  You can deplete thiamine stores in as little as nine days.  You can have a subclinical deficiency for years.  Because your diet might include nutritionally dense foods once in a while, your symptoms can fluctuate.  

"Normal" blood levels of vitamins don't reflect a deficiency within the tissues and organs.  More thiamine is needed when we are under physical and emotional stress.  

Gluten free facsimile foods are not required to be enriched with vitamins like their gluten containing counterparts.  

I took high dose Thiamine and  B Complex supplement and magnesium to correct my deficiencies.  

Dr. Lonsdale's article explains this...

Hiding in Plain Sight: Modern Thiamine Deficiency

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

Discuss with your doctor and nutritionist about the benefits of supplementing with vitamins and minerals while on the gluten free diet.  

Hope this helps!

[Walter123]

Thanks for all the info; I passed all of this on to the Endocrinologist (PA) that I have been seeing; her response; "we typically see thiamine deficiencies in more severe cases, like with alcohol abuse"; what's your thoughts, should I request my levels checked after off all vitamins for 6-8 weeks? 

 

I also just switched to Tirosint which has no gluten for Thyroid; I hope I can get to the bottom of things.

[trents]

3 minutes ago, Walter123 said:

Thanks for all the info; I passed all of this on to the Endocrinologist (PA) that I have been seeing; her response; "we typically see thiamine deficiencies in more severe cases, like with alcohol abuse"; what's your thoughts, should I request my levels checked after off all vitamins for 6-8 weeks? 

 

I also just switched to Tirosint which has no gluten for Thyroid; I hope I can get to the bottom of things.

The medical world's standard answer because of their focus on treating symptoms rather than causes and not giving attention or having knowledge of subclinical signs of vitamin and mineral deficiencies. Also, I believe the RMDA standards themselves are insufficient. You have nothing to lose by taking B vitamin supplements. They are water soluble so excesses will be peed out.

[knitty kitty]

Alcoholism causes malabsorption of vitamins.  Celiac Disease causes malabsorption of vitamins. 

Doctors are trained to think in little boxes.  

I had five doctors asked me if I drank.  When I insisted that I didn't, they turned on their heel and walked away.  If it walks like a duck and quacks like a duck....

The World Health Organization says Thiamine deficiency can be diagnosed if, after taking thiamine hydrochloride 500 mg/day for several days, improvement is seen.  WHO says if it is thiamine deficiency, improvement can be seen in several hours to days.    WHO says Thiamine is safe and nontoxic so there's no harm in giving it. 

I started taking thiamine hydrochloride as Dr. Lonsdale describes.  I started with 300 mg.  I noticed improvement within an hour.  I gradually added more over several days until I was taking 1000 mg a day.  I started taking Allithiamine and Benfotiamine.  These are fat soluble forms of thiamine that get inside cells easily.  Allithiamine crosses the blood brain barrier.  Benfotiamine helps heal the intestines and is beneficial for Diabetes.  I had improvement with each form of Thiamine.  After two years, I have reduced the amount, but I am still taking maintenance doses every day.  

This is my thread where I've put research and bits of my story.  Posterboy had the same thing and helps with research.

 

[Walter123]

27 minutes ago, knitty kitty said:

Alcoholism causes malabsorption of vitamins.  Celiac Disease causes malabsorption of vitamins. 

Doctors are trained to think in little boxes.  

I had five doctors asked me if I drank.  When I insisted that I didn't, they turned on their heel and walked away.  If it walks like a duck and quacks like a duck....

The World Health Organization says Thiamine deficiency can be diagnosed if, after taking thiamine hydrochloride 500 mg/day for several days, improvement is seen.  WHO says if it is thiamine deficiency, improvement can be seen in several hours to days.    WHO says Thiamine is safe and nontoxic so there's no harm in giving it. 

I started taking thiamine hydrochloride as Dr. Lonsdale describes.  I started with 300 mg.  I noticed improvement within an hour.  I gradually added more over several days until I was taking 1000 mg a day.  I started taking Allithiamine and Benfotiamine.  These are fat soluble forms of thiamine that get inside cells easily.  Allithiamine crosses the blood brain barrier.  Benfotiamine helps heal the intestines and is beneficial for Diabetes.  I had improvement with each form of Thiamine.  After two years, I have reduced the amount, but I am still taking maintenance doses every day.  

This is my thread where I've put research and bits of my story.  Posterboy had the same thing and helps with research.

I appreciate you taking the time to describe everything; what is the best route to go about acquiring and a reputable brand names; I know prior to being Celiac, I would say I drank alcohol on a "regular" consistent basis, over 2 drinks a day more than 3 days a week; once the issues started, I went cold turkey and haven't had a drink in years.

Should I insist that Endocrine does further testing or just take and see if it helps; thanks again! 

[knitty kitty]

Just take it and see if it helps. 

Remember thiamine needs magnesium to function properly, so get a magnesium citrate or magnesium glycine supplement, too.  

With your history of using alcohol...is your doctor aware of your previous alcohol use?   

"Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

And...

https://www.hormonesmatter.com/recovery-from-alcohol-induced-gastric-beriberi-and-dysautonomia/

And...

https://www.hormonesmatter.com/mitochondria-energy-not-genetics-underlies-health-disease/

 

Thiamine Hydrochloride is the cheapest of the thiamine supplements I take.  It's a good place to start if you don't want to invest a lot.  I was skeptical, too, but within minutes of taking it, I saw improvement.  

 

This is the brand of Allithiamine I take...

https://www.lifeextension.com/vitamins-supplements/item26106/allithiamine

Benfotiamine

https://www.lifeextension.com/search#q=benfotiamine&t=coveo4A2453FD

And thiamine hydrochloride...

https://www.nowfoods.com/products/supplements/vitamin-b-1-100-mg-tablets

 

[Walter123]

Typically during any of the visits to the Dr. they have asked if I drink alcohol, ect; I have always stated, I don't drink anymore; then they move on and are not concerned.

I do have Spring Valley brand B1 supplement 250mg; I already took one; I will see if the I can get the magnesium at the local store; how much of that should I take?

 

Thanks

[knitty kitty]

Try to take at least 100% of the RDA.  My magnesium supplement says two tablets is 40% of the RDA, so I take five tablets... two pills after two meals and one pill after third meal or snack.  I take thiamine at the beginning of meals and the magnesium at the end of meals.  

Be aware that too much magnesium may have a laxative effect.  (Think Milk of Magnesia).

Every one is different, so you may have to experiment to find what's right for you.  

Alcohol and Thiamine deficiency can damage the mitochondria, the energy production organelles which utilize thiamine.  This damage can persist long after alcohol consumption stops.  

Doctors have prejudiced views about vitamins.  Doctors think deficiency diseases don't happen anymore because we all have plenty to eat, but the Standard American Diet (high carbohydrate, low fat and highly processed food) is making us sick. 

Doctors are trained in institutions funded by Big Pharmaceutical Companies.  Doctors are trained to prescribe pharmaceuticals to cover up symptoms.  

[trents]

I want to echo what KK said about Magnesium having potential to have a laxative effect. Choosing one of the more easily assimilated forms will reduce the risk of this. In general, magnesium is not absorbed well by the gut and tends to draw water into the intestines, thus creating the laxative effect. The more easily assimilable forms (like magnesium glycinate and magnesium citrate) are less likely to cause this. There are other good choices in that regard: https://www.healthline.com/nutrition/magnesium-types

I would start with a partial dose if I were you and slowly increase it until you find the point where it starts to make you go poo more than you want. This going to vary from person to person, in part depending on how much dietary magnesium they are getting and other individual factors. I take the glycinate form for which the bottle instructions say to take two tabs twice daily which would be 96% of the RMDA. However, I find that taking more  than 200mg every other day starts to make me go poo more often than I like. So, I alternate magnesium with zinc in my pill box.

[GF-Cate]

21 hours ago, Walter123 said:

The more recent symptom that is the MOST concerning is hair thinning on head and noticeable round patches on different spots on legs.  Been told by the doctors that this all can be from any of the above or the stress and anxiety I have expressed to them.

I want to feel better, but know these physical symptoms are mounting and one of the most fearful is losing your hair in spots; seems trivial with what some face, but scary when you can't get real answers to know why your body is behaving the way it is.

 

There is another autoimmune disease called alopecia areata, so it is possible you have developed a 4th autoimmune disease that is causing the hair loss. Patchy alopecia areata causes coin-sized patches of hair loss on the scalp or other areas of the body.

Thyroid disease (Hashimoto's if autoimmune hypothyroid, Grave's if autoimmune hyperthyroid) as well as the medications for thyroid disease can cause hair loss/thinning as well unfortunately. And as noted, so can other autoimmune issues, stress, nutrient deficiencies (low ferritin levels can contribute to hair loss/lack of regrowth and often aren't looked at).

You should be sure your endocrinologist is running the full thyroid panels for your blood work, including antibody levels (goal is to get antibody levels to undetectable & stop your body's attack on your thyroid). Many docs will not run a full panel, but great if you can find one who will. Otherwise you can order them yourself on sites like Ulta Lab Tests. You may want to ask your doc for a thyroid ultrasound as well if you haven't had one.

Have you had any celiac-specific follow-up care since your celiac diagnosis?

- repeat bloodwork to monitor antibody levels 

- repeat endoscopy to be sure villi blunting is healing

- bone density testing

- testing and treatment for micronutrient deficiencies

- referral to a dietician

...and more. This link has a great info on follow-up care:

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

You may consider switching to an eating plan like the "AIP" (autoimmune protocol) to help all of your autoimmune conditions. If you google you will find tons of info about it. 

If you're open to working with a functional medicine doctor, they may be able to help as well.

 

[Kate333]

Hi Walter.  

As you note, you have struggled with chronic anxiety/depression for quite some time.  This problem, esp. if unaddressed/untreated can result in in MANY physical symptoms, including those you describe.  I speak from experience and your experience mirrors mine of the last 2+ years as I have had many of the same symptoms, even on a STRICT gluten-free diet.  For a detailed description of the strong link between mind and other body systems, check out this website:  anxietycentre.com. 

Suggestions: 

Make sure you are doing everything in your power to eliminate ALL gluten from your diet--even cross-contamination risks--because diet must be 100% gluten-free in order to heal.  Try avoiding restaurants, packaged/processed food, even those with gluten-free claims, which are often sources of cross-contamination because of lax regulations.   

Get a follow-up TTG/IgA blood test to assess your current gluten antibodies.  

Ask your primary doc for a referral for evaluation/treatment of your chronic anxiety/depression issues.  You may benefit from short term counseling or medication.  Aside from the celiac disease issue (which is strongly linked to severe anxiety/stress), you will only begin to feel better once your ENTIRE body begins to heal, something that will likely be difficult until you begin to deal with the chronic stress/anxiety/depression.

Good luck and I hope you feel better soon!

[Sabaarya]

On 5/31/2022 at 6:09 PM, Walter123 said:

Hi everyone, been awhile since I posted here; diagnosed over a year ago with celiac disease; I was asymptomatic and went to PCP for dry mouth and feeling of swelling in the tongue; later find out after testing I had celiac disease.

Was told the answer to feeling better was gluten-free diet; I have done this, maybe not 100% perfect, meaning I know some gluten may have cross contaminated its way into my diet, but I always ensure whatever I eat is gluten-free.

I would say I pretty much feel the same if not worse since my celiac disease diagnosis.

Around the same time my thyroid levels were checked and was later diagnosed with Hypothyroid, been taking thyroid medicine; my levels have been high and low, off and on with some adjustment in meds.

Being frustrated, I went to the Cleveland Clinic to get second opinions.  Results were more or less the same just with a bit more explanation.  Along the same time I complained about numbness and cold hands; told I have symptoms of Raynaud's.

The more recent symptom that is the MOST concerning is hair thinning on head and noticeable round patches on different spots on legs.  Been told by the doctors that this all can be from any of the above or the stress and anxiety I have expressed to them.

I have truly never dealt with my symptoms of anxiety and some mild depression; my anxiety is the biggest culprit; is has made me down right physically ill, chest pains, light headedness, nausea and a panic attack that sent me to the ER after thinking I was having heart trouble. 

All this is not typical me; I am 48yoa, active, work two jobs in professional careers; BUT, a ton of family/child issues have hit hard over the past ten years or so; I know this is celiac disease specific site, but I feel many here have faced numerous medical conditions on their journey to get a celiac disease diagnosis; 

I want to feel better, but know these physical symptoms are mounting and one of the most fearful is losing your hair in spots; seems trivial with what some face, but scary when you can't get real answers to know why your body is behaving the way it is.

If anyone can provide some insight or direction based on any similar experiences it's much appreciated..

 

 

Hi Walter. I know it’s super stressful. I was diagnosed last year and pretty much had all your symptoms. I’ve had endocrinologist and rheumatologist visits and everything was normal. I had hand tingling,severe back pain, tinnitus, plantar falsities, dizziness,hair thinning not patches though, like bunch of staff, I feel little bit better after gluten-free diet,some improvements. Supplements help a lot, like iron and B complex and vitamin D,but my main problem was severe anxiety/depression. I was resisting on taking medication for that but my GI literally made me to take it. He said most of your symptoms are stress related and that causes delay on your healing. I started Lexapro and it helped me a looooooottt. After taking it for 6 months I’ve decided to stop it cause I’m planning to get pregnant. Celiac or other autoimmune diseases are very stressful bc you know that there is no cure for that and all of that negative thoughts keeps your body in constant stress which is basically toxic for all your body. So I think if you are not able to control that maybe with medication you’ll be able to calm your nervous system and give your body opportunity to heal itself. Wish you get better soon!

[Beverage]

I didn't show any thiamine deficiency, not alcoholic, but sure did have a very positive response to taking a thiamine supplement in the oil form, benfotiamine.  After going for allergy shots for years, complaining about asthma, many pulmonologist visits, bad reactions to steroid inhalers (severe high blood pressure when I'm normally low BP) that the pulmonologist finally said "I can't help you anymore"... Then followed Knitty Kitty's advice about the oil form of thiamine, and magic within a few days, my very severe asthma cleared up, went from taking the albuterol inhaler almost every hour to taking it once a day after my exercise.  So whatever, I take 1 capsule befotiamine every day and ignore the docs that aren't knowledgeable about supplements and nutrition.

[Jays911]

On 6/1/2022 at 9:18 AM, RedFacedJock said:

For anxiety I highly recommend a combination of Magnesium Glycinate (200mgs), L-Taurine (1000mgs) and L-Theanine (200mgs). Taken twice per day.

Most multi vitamin products usually contain no more than 100mgs of Magnesium and it's usually the poorly absorbed "Stearate" compound, as opposed to the vastly super Glycinate compound.

400mgs of Magnesium Glycinate taken each day can make a dramatic difference.

As for the hair falling out. I can't really say much for that. It may be related to your anxiety or it could just be a natural occurrence from ageing. 

 

[Jays911]

Two things. Autoimmune diseases tend to cluster. I started with hypothyroidism, then celiac disease, then RA, then gout, then gluten ataxia. I agree magnesium is a key. I was falling from ataxia last year until I got my magnesium addressed. But have your docs check all your levels and adjust. And I agree that a comprehensive vitamin cocktail will help as well. Blessings.