Newly Diagnosed - Symtoms

[Walter123]

Hello, 46 yo/m recently diagnosed with Celiac; originally went o my family doctor for slight numbness in fingers, numbness in lips occasionally and swollen glandes in cheeks producing heavy saliva.

PCP did blood workup and found antibody to Gluten; this prompted EGD scope which revealed moderate to heavy damage indicating Celiac.  Among this diagnoses I also was found to have Hashimoto's and they found the H Pylori bacteria in my gut.

Since these procedures I have been put on thyroid medicine, and heavy antibiotics for the H Pylori; of course ordered on Gluten Free Diet.

My chief symptom is the swelling of the glandes inside my cheeks and the numbness; I don't know if the doc's are on point with what is going on with me; could the H Pylori be causing all of this OR is it all the perfect storm of these different diagnoses?

My Mom has Hypothyroidism so this tends to make me believe I may; should I get a second opinion?

Just want to feel well again someday.

Thanks for any thoughts. 

[GFinDC]

Hi Walter,

Welcome to the forum!

Hashimoto's Thyroiditis is associated with celiac disease.  People with celiac get Hashimoto's at a little higher rate than other people.  We have several forum members who have it.  The thyroid gland is a large butterfly shaped gland with the body centered on the front of the throat and the wings wrapping around either side.  In Hashimoto's the immune system produces antibodies that attack the thyroid gland.  That can cause swelling and enlargement of the thyroid and eventual damage.  The damage can lead to hypothyroidism or sometimes temporary hyperthyroidism.  The thyroid antibodies may decrease after going gluten-free but may not also.  There's a chance your mother has celiac disease also.  She should be tested IMHO.  And any other siblings.

The blood antibodies being positive and the endoscopy showing celiac type damage to the small intestine is the standard criteria for diagnosing celiac.  So I don't think there's much doubt at all that you have celiac.  The other things they may consider are low levels of certain vitamins and minerals that are caused by not being able to absorb them due to gut damage.

Has your doctor told you to go gluten-free yet?  I guess you could go for a 2nd opinion but I don't think you'll hear anything different. 

[trents]

Welcome to the forum, Walter.

You have several things going on there that need attention. The swollen glands in the cheeks is a new one I haven't heard of before.

The numbness could be due to Celiac disease as neurological problems are common with celiac disease. 

Hashimoto's is a thyroid disease and likely causing the low levels of thyroid hormone. So this would be the same as hypothyroidism. This is also very common with celiac disease. 

One important challenge for you is to get educated as to where wheat/barley/rye gluten is found in the food supply. It shows up in prepared foods you would never expect to find it in like canned tomato soup, soy sauce, and chocolate syrup - just to name a few. Wheat in particular is widely deployed in the food industry as an inexpensive thickening and texturing agent. Wheat starch can be found in supplements and meds. And then there is the whole slice of the pie we call cross contamination where things that wouldn't have gluten naturally or intentionally wind up with it in the growing, transporting, storing and processing phases of production. And then there is cross contamination in restaurants and fast food outlets because non gluten things are cooked in the same vessels as breaded things or cut and dished with utensils that were also used with gluten containing foods.

Keep in mind that the goals is not just to eliminate most of the gluten from your diet by eliminating bread and pasta and wheat four containing baked goods but to completely eliminate all gluten, even minor amounts.

It would not surprise me if you get some of these other issues under control that the swollen glands in the cheeks my also be corrected.

Edited December 18, 2020 by trents

[Scott Adams]

I just want to share the category where our articles on thyroid issues and celiac disease reside:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/

[Walter123]

Thanks for responding; nasty taste in mouth right now may be from Antibiotics prescribed for H Pylori found during EGD; 3000mg per day (14) days.

[knitty kitty]

Welcome to the forum, Walter! 

Excessive saliva production is an early symptom of Niacin (Vitamin B3) deficiency.   I know because I had this, too.  

H. Pylori and Celiac Disease can mess with the proper absorption of vitamins and minerals.  

The group of eight B vitamins are affected because they are water soluble and can be used up or lost quickly during illness.  The body can't store most of the B vitamins more than a month.  

H. Pylori can prevent the absorption of Vitamin B12 because the intrinsic factor needed for absorption is affected by the H. Pylori.

Thiamine (Vitamin B3) is another B vitamin that can be quickly lost during illness and infection.  Thiamine deficiency has an effect on Hashimoto's thyroiditis.

"Thiamine and Hashimoto's thyroiditis: a report of three cases"

https://pubmed.ncbi.nlm.nih.gov/24351023/

Fat soluble vitamins like Vitamins A and D are frequently low in newly diagnosed Celiacs.  Vitamin D is especially important for reducing inflammation.  

Proper follow up care for Celiacs is checking for vitamin and mineral deficiencies.  

Talk to your doctor about supplementing Vitamin D and taking a B 100 Complex vitamin.  

Hope this helps.

[Walter123]

Thank you; I began taking a multi-vitamin and spoke briefly to the gastro staff about my vitamin labs; I am not sure if they checked specifically B3?  I have a video appointment with the Endocrinologist 12/31; I will address this, but some just look at the basic vitamins and say "they look decent for now" - if I should be low in this area any suggestions on a solid multivitamin that will get things back on track; thank you!

[trents]

Kirkland (Costco store brand) multivitamin. gluten-free. Also, I would suggest taking a B Complex. Again, Kirkland has a gluten free B complex. 

[Walter123]

Thank you.

[trents]

Costco carries a lot of gluten-free products, not only vitamins and supplements but food items as well. And they are clearly marked most of the time. Costco has good quality control.

[GFinDC]

Hi Walter,

The labdoor site posts review of tests they do on vitamins.  They aren't focused on gluten-free vitamins, so you need to verify gluten-free status yourself.

https://labdoor.com/

Your doctor should be able to give you a report of your vitamin and mineral levels to review.  If you are paying for a test they owe you the results.

If you prescribed thyroid hormones you'll likely run into a lot of thyroid related info on the web.  Some of it good, some of it dubious.  So do your own research on the various claims before acting on it.  Some people report having had celiac reactions to some thyroid hormones.  I haven't seen any of those issues lately but they have been around the web for a while.  Hopefully, and I think this is true, those issues have been resolved.

[knitty kitty]

Sorry about that typo. 

Niacin is Vitamin B 3.

Thiamine is Vitamin B1. 

The B vitamins all work together, so a B Complex supplement will cover all of them.  There are lots of studies done that find taking higher doses of thiamine and niacin have additional health benefits.  The B vitamins are water soluble, so any the body doesn't absorb is easily urinated out.  

Blood tests don't accurately measure vitamin deficiencies because the vitamins are used inside the cells of tissues.  The body likes to keep a constant amount in the blood to supply the brain, but the tissue cells can have depleted vitamin stores.  Blood tests won't always reflect vitamin deficiencies until the deficiencies are extreme.  

Talk to your doctor or dietitian.  

Vitamin D is often low in the newly diagnosed.  Vitamin D helps reduce inflammation.  

Hope this helps

 

[Kate333]

I take calcium, Vitamin B12 and D supplements (Nature's Truth brand with gluten-free label on the green bottle).  I honestly can't say they make me feel any better.  I wouldn't start taking any supplements without having first consulted with a GI doc to discuss your lab results.  You may need a supplement of one kind of vitamin but not another.  Also, taking too much of a vitamin supplement--like getting too little--can also create health problems.  IMO too many people take vitamins willy-nilly and end up either wasting a ton of money or harming their health.  Just my 2 cents.  

[Posterboy]

7 hours ago, Walter123 said:

Hello, 46 yo/m recently diagnosed with Celiac; originally went o my family doctor for slight numbness in fingers, numbness in lips occasionally and swollen glandes in cheeks producing heavy saliva.

PCP did blood workup and found antibody to Gluten; this prompted EGD scope which revealed moderate to heavy damage indicating Celiac.  Among this diagnoses I also was found to have Hashimoto's and they found the H Pylori bacteria in my gut.

Since these procedures I have been put on thyroid medicine, and heavy antibiotics for the H Pylori; of course ordered on Gluten Free Diet.

My chief symptom is the swelling of the glandes inside my cheeks and the numbness; I don't know if the doc's are on point with what is going on with me; could the H Pylori be causing all of this OR is it all the perfect storm of these different diagnoses?

My Mom has Hypothyroidism so this tends to make me believe I may; should I get a second opinion?

Just want to feel well again someday.

Thanks for any thoughts. 

 

5 hours ago, knitty kitty said:

Welcome to the forum, Walter! 

Excessive saliva production is an early symptom of Niacin (Vitamin B3) deficiency.   I know because I had this, too.  

H. Pylori and Celiac Disease can mess with the proper absorption of vitamins and minerals.  

The group of eight B vitamins are affected because they are water soluble and can be used up or lost quickly during illness.  The body can't store most of the B vitamins more than a month.  

H. Pylori can prevent the absorption of Vitamin B12 because the intrinsic factor needed for absorption is affected by the H. Pylori.

Thiamine (Vitamin B3) is another B vitamin that can be quickly lost during illness and infection.  Thiamine deficiency has an effect on Hashimoto's thyroiditis.

"Thiamine and Hashimoto's thyroiditis: a report of three cases"

https://pubmed.ncbi.nlm.nih.gov/24351023/

Fat soluble vitamins like Vitamins A and D are frequently low in newly diagnosed Celiacs.  Vitamin D is especially important for reducing inflammation.  

Proper follow up care for Celiacs is checking for vitamin and mineral deficiencies.  

Talk to your doctor about supplementing Vitamin D and taking a B 100 Complex vitamin.  

Hope this helps.

Walter,

I second what Knitty Kitty said.

Try you a B-complex , Vitamin D, plus Benfotiamine (a Fat Soluble B-1) found in the diabetic section.

Plus a Magnesium Glycinate (all with meals) and you will be amazed how much better you begin to feel in a couple months.

B-Vitamins are very important for proper working of your Thyroid.

A matter of fact being low in Riboflavin aka B2 will lead  to a Hypothyroid state!

But because it is 30+ years old.....doctor's have never heard about it or probably never even studied it!

See this research that explains the connection between Riboflavin and Hypothyroidism.

Entitled "Riboflavin metabolism in the hypothyroid human adult"

https://pubmed.ncbi.nlm.nih.gov/3809170/

The tingling in your fingers can be from the Low Thiamine Knitty Kitty mentioned....and why B-Vitamins are best taking with meals and as a B-Complex.

Your Extremities will "Tingle" when you have developed Beri Beri....and the doctor's don't know this anymore....and a neat fact/trick....forgotten to us today....

Is when a doctor "thumps" your knee during your annual physical....and your knee doesn't reflex....on the first "whack"....your slow response is a clinical suspicion of Beri Beri....but this is a forgotten little known fact....similarly why a doctor's takes your temperature is to check your "thyroid" health.....a point (either way) can be a Hyper (high) or Hypo (Low) body temperature a sign of "poor/unhealthy" thyroid  health etc...

See this great article recently in the NYT Magazine...entitled "Her Legs Would Barely Follow Her Brain. Then She Saw Double"

https://www.nytimes.com/2020/12/03/magazine/wernickes-encephalitis.html 

I had tingling in my hands and feet too! but the doctor's didn't have a clue sadly!

Finding a Fat Soluble B-1 like Benfotiamine or Allithiamine (with meals) is important in overcoming Beri Beri because they are much more highly absorbed than the form found in a Mutlivitamin or B-Complex.

See also my Posterboy blog posts that explains why it can be good for newly diagnosed Celiac's to take Thiamine for a Season....

https://www.celiac.com/blogs/entry/2731-a-case-for-thiamine-supplemenation-in-celiacs-if-only-for-a-season-in-time/

I hope this is helpful but it is not medical advise.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God.

[Walter123]

Thanks for all the information; I picked up a B Complex (Nature Made); also I was just curious but I take a a "Statin" for slightly high cholesterol that is hereditary; any chance I could be having a reaction to this med; been on it for about 6 months; other than the glandes in mouth, the rotten taste last night sleeping (may have been acid in stomach) I feel pretty well overall; just want to ensure I am doing all I can to hope for a healthier future.  I forgot to mention, they did find 2 nodules on my Thyroid (guess these are common); one doctor says they can rescan in a year because one is smaller than 1cm the other they said they could biopsy because it is 1cm. 

[trents]

Sorry, the B-complex at Costco is not Kirkland but Nature Made. I told you wrong.

[Walter123]

So as of now, I began taking a B-12 Complex and D; I am going to follow up with my PCP to see if I should have another sleep study done since I was previously diagnosed with apnea and could not tolerate a CPAP so I just gave up and starting to try and sleep on my side; maybe it is more serious now that all of this is popping up?

I have been eating gluten-free since I got my results; my wife picked up a couple bags of stuff from the local Whole Foods; does anyone have a "go to" place where they can get gluten-free foods and reasonable prices?  Is there an online store devoted to this?

As stated the only real symptom I continue to struggle with is the swelling in the cheeks and lately a horrible taste in mouth; maybe the 3000mg per day of antibiotics I'm taking for the H Pylori.

[trents]

Bob's Red Mill online. Shipping might be expensive for you however since Bob's is in Oregon.

[knitty kitty]

4 hours ago, Walter123 said:

So as of now, I began taking a B-12 Complex and D; I am going to follow up with my PCP to see if I should have another sleep study done since I was previously diagnosed with apnea and could not tolerate a CPAP so I just gave up and starting to try and sleep on my side; maybe it is more serious now that all of this is popping up?

I have been eating gluten-free since I got my results; my wife picked up a couple bags of stuff from the local Whole Foods; does anyone have a "go to" place where they can get gluten-free foods and reasonable prices?  Is there an online store devoted to this?

As stated the only real symptom I continue to struggle with is the swelling in the cheeks and lately a horrible taste in mouth; maybe the 3000mg per day of antibiotics I'm taking for the H Pylori.

Sleep apnea is a symptom of thiamine deficiency!

"Sleep Requires Energy"

https://www.hormonesmatter.com/sleep-requires-energy/

And science-y study....

"Sleep-disordered breathing: effects on brain structure and function"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3778068/

Hope this helps!

 

[Scott Adams]

Interesting, and I've been taking thiamine now for a couple of months, so we will see if it helps with my apnea.

[knitty kitty]

Scott, 

I'm taking Lipothiamine from Cardiovascular Research and have tried Allithiamine from Ecological Formulas.  These are fat soluble versions of thiamine that cross the blood/brain barrier more easily.  

"Benfotiamine, a synthetic S-acyl thiamine derivative, has different mechanisms of action and a different pharmacological profile than lipid-soluble thiamine disulfide derivatives"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2435522/

I continue to take Benfotiamine for my diabetes.  Taking both the lipothiamine and benfotiamine is not a problem for me.  

Hope this helps!

 

[Walter123]

What is the best route to go in determining;

1. If I do in fact have continue to have sleep apnea and what type I have?  I used to wake up occasionally gasping for air, but wife says I no longer do that?

2. Can my thiamine levels be checked with lab work?

 

[knitty kitty]

The erythrocyte transketolase blood test determines best if there's a deficiency. 

This link might help....

And another....

I'm not a doctor.  This is what has helped me.  

Hope this helps.

[Walter123]

Thank you for the information, I will be looking into it.

[Scott Adams]

Thank you @knitty kitty, I am taking Benfotiamine that was recommended to me by @Posterboy, as well as Magnesium Citrate and other vitamins like B complex, C, and D, to deal with RLS and now apnea. As my grandmother used to say..."it's hell getting old." I had no idea what she meant at the time because I was young.