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Newly Diagnosed - Symtoms

Walter123
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GFinDC Veteran
GFinDC
Posted
22 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.

Hi Walter,

Yes, the antibiotics can cause a bad taste and indigestion.  Bacteria are an important part of the digestive process.  Your antibiotics probably list digestive symptoms as a side affect.  The bad taste could be related to your thyroiditis also I imagine.  Are you taking anything to help with that issue?

Some of the vitamin stores like Swanson's and Vitacost sell gluten-free foods also.  And Glutenfree Mall too  Aldi has a line of gluten-free foods in their stores.  Kroger and many grocery stores have gluten-free sections or sometimes spread the gluten-free foods throughout the store shelves.

If you can concentrate on eating whole foods for a few months that would be good.  Meats, veggies, eggs, nuts and fruit.  One ingredient foods in other words.

I hope you are avoiding dairy and oats also?  Those are often problems for new gluten-free eaters.  They may be ok after 2 or 3 months gluten-free though.

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Walter123 Explorer
Walter123
Posted
  • Author

I have NOT been avoiding dairy, basically just eating stuff that has gluten-free label; for example, popcorn states gluten-free on bottle as well as bread my wife bought at Whole Foods; is all of this ok as long as it states gluten-free?  What shocks me is I had no idea this was all going in in my body; I did see doctors for various symptoms sometimes looked at I think as a Hypochondriac; ringing in the ears, frequent constipation, recently frequent urination, had all kinds of tests, colonoscopy, MRI of head (ear ringing) full cardiac workup for shortness of breath and tingling in finger (one actually cramped up and turned purple twice) cardiologist said it was likely Raynauds; put me on a BP med; then most recently the swelling inside of cheeks and numbness in lips (salivating) IS this all from Celiac!  I look back and wonder why only recently my family PCP decided to run a blood test for it; how much damage did I do to my insides ( biopsy indicated moderate to severe).  That said I really want to make sure I follow the proper diet; maybe I may actually feel well/normal at some point? 

GFinDC Veteran
GFinDC
Posted
5 hours ago, Walter123 said:

I have NOT been avoiding dairy, basically just eating stuff that has gluten-free label; for example, popcorn states gluten-free on bottle as well as bread my wife bought at Whole Foods; is all of this ok as long as it states gluten-free?  What shocks me is I had no idea this was all going in in my body; I did see doctors for various symptoms sometimes looked at I think as a Hypochondriac; ringing in the ears, frequent constipation, recently frequent urination, had all kinds of tests, colonoscopy, MRI of head (ear ringing) full cardiac workup for shortness of breath and tingling in finger (one actually cramped up and turned purple twice) cardiologist said it was likely Raynauds; put me on a BP med; then most recently the swelling inside of cheeks and numbness in lips (salivating) IS this all from Celiac!  I look back and wonder why only recently my family PCP decided to run a blood test for it; how much damage did I do to my insides ( biopsy indicated moderate to severe).  That said I really want to make sure I follow the proper diet; maybe I may actually feel well/normal at some point? 

I think most popcorn should be fine to eat.  As always, you need to verify the ingredients though.

There are a myriad of possible symptoms related to celiac disease Walter.  For instance, look up any of the conditions caused by malnutrition. 

I can't say for sure what is causing your cheeks to swell.  It could be related to celiac or be from something entirely different.  Your cheeks are awfully close to your throat and the thyroid gland though, so I tend to think the cheek issue would be related to the thyroid issue.  Maybe reviewing this Wiki article on the thyroid will help.

https://en.wikipedia.org/wiki/Thyroid

For a simple getting started gluten-free diet it's best to do just that.  Stick to a simple diet.  Simple foods, few spices, few ingredients.  All this simplicity is to help your body adjust quicker.  The fewer ingredients you consume the less likely a problem will sneak in.  After 6 months or so it's likely you will have a better understanding of celiac disease and the gluten-free diet and can slowly expand your diet.

The damaged gut is in recovery mode and hopefully clean, simple foods that are easier to digest will help it recover.

 

Walter123 Explorer
Walter123
Posted
  • Author

Maybe I am just impatient to feel better and pinpoint my symptoms; I feel it's very easy to just blame everything that doesn't feel right on Celiac; I know it is a serious issue but am I being too impatient is wanting my symptoms to improve?

My main culprit is swelling inside the cheeks; mainly on one side; I do have a little numbness in my upper lip at times which comes and goes; my PCP said yesterday that maybe I should consult with an Oral Surgeon to see what is going on inside mouth.

I have stopped eating Gluten ( eating nothing that does not have a gluten-free label or known to Gluten Free).

Since I have this other issue of Hypothyroid (Hashimoto's) I am trying to reamin confident that one of these two is causing symptoms and will improve in time.

Been on Thyroid medicine for about a week as well as Gluten Free.

Beverage Proficient
Beverage
Posted
On 12/20/2020 at 12:02 PM, trents said:

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

Bob's has gluten free oats, which caused me a BIG problem. I am sure their oats are gluten free, meaning that they meet the legal requirements to make that claim, but must be at the higher end of that limit, and can be a problem for Celiac's.  I have found that I can eat "purity protocol" gluten-free oats.  I tried gluten-free HARVEST brand and have no problems.

https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/

 

GFinDC Veteran
GFinDC
Posted
14 hours ago, Walter123 said:

Maybe I am just impatient to feel better and pinpoint my symptoms; I feel it's very easy to just blame everything that doesn't feel right on Celiac; I know it is a serious issue but am I being too impatient is wanting my symptoms to improve?

My main culprit is swelling inside the cheeks; mainly on one side; I do have a little numbness in my upper lip at times which comes and goes; my PCP said yesterday that maybe I should consult with an Oral Surgeon to see what is going on inside mouth.

I have stopped eating Gluten ( eating nothing that does not have a gluten-free label or known to Gluten Free).

Since I have this other issue of Hypothyroid (Hashimoto's) I am trying to remain confident that one of these two is causing symptoms and will improve in time.

Been on Thyroid medicine for about a week as well as Gluten Free.

Well, it sounds like you are the right track for potential symptom improvement Walter.  Staying gluten-free 100% is the best way to get the celiac immune response settled down.  It can take months for the celiac immune response to reduce to normal levels.  The immune attack on your thyroid may and may not respond to the gluten-free diet.  It could be that the overall reduced immune activity will help there.  But there is no way to know for sure except doing the gluten-free diet.  I hope you feel better soon.

 

trents Grand Master
trents
Posted

Be patient with the thyroid problem. It can take a while to get the med dosage dialed in.

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Walter123 Explorer
Walter123
Posted
  • Author
8 hours ago, GFinDC said:

Well, it sounds like you are the right track for potential symptom improvement Walter.  Staying gluten-free 100% is the best way to get the celiac immune response settled down.  It can take months for the celiac immune response to reduce to normal levels.  The immune attack on your thyroid may and may not respond to the gluten-free diet.  It could be that the overall reduced immune activity will help there.  But there is no way to know for sure except doing the gluten-free diet.  I hope you feel better soon.

 

Thanks for response; for any practicing Catholics here; can you take communion with Celiac; I did so this morning and then thought “what did I just do”, the reading I’ve done said the Church has to use bread that contains some wheat, but they do have reduced wheat wafers.

trents Grand Master
trents
Posted
7 minutes ago, Walter123 said:

Thanks for response; for any practicing Catholics here; can you take communion with Celiac; I did so this morning and then thought “what did I just do”, the reading I’ve done said the Church has to use bread that contains some wheat, but they do have reduced wheat wafers.

In this situation, would it be possible to take GliadinX or something similar in order to mitigate the small amount of gluten in the communion wafer?

Beverage Proficient
Beverage
Posted

If it has a teeny bit, that's too much. You can call and ask what they use. No, using gliadenx is not a good idea, you must not consume any known gluten. I have read that others made their own little wafers at Home and brought a batch for the priest to bless and deliver from a separate container. My mom used to just take it mentally, i.e., get the blessing and imagine taking the water. God knows, he's not limited by physical wafers.

trents Grand Master
trents
Posted
(edited)

I

53 minutes ago, Beverage said:

If it has a teeny bit, that's too much. You can call and ask what they use. No, using gliadenx is not a good idea, you must not consume any known gluten. I have read that others made their own little wafers at Home and brought a batch for the priest to bless and deliver from a separate container. My mom used to just take it mentally, i.e., get the blessing and imagine taking the water. God knows, he's not limited by physical wafers.

I think what would be allowed as far as alternatives go will vary from priest to priest and parish to parish. The Catholic Church is not as monolithic as many imagine. I would suggest that any Catholics in this situation discuss the options with their priest.

Edited by trents
Scott Adams Grand Master
Scott Adams
Posted

We've done lots of articles on this topic:

https://www.celiac.com/search/?&q=communion&type=cms_records2&search_and_or=and&search_in=titles 

 

GFinDC Veteran
GFinDC
Posted

There are several brands of gluten-free crackers available.  Blue Diamond Nut Thins, and Mary's Gone Crackers are a couple.  Pretty sure Aldi has several types of gluten-free crackers also.  Your priest may be willing to use those instead?  They'd need to be wrapped in a separate cloth from the gluten wafers.  And it would be better if the priest would allow you to grab the crackers from the tray yourself.

Scott Adams Grand Master
Scott Adams
Posted

There is an official low gluten host made by Catholics using Codex wheat starch that is approved by the church. It is, I believe, under 20ppm.

DJFL77I Experienced
DJFL77I
Posted
On 12/24/2020 at 9:05 AM, Walter123 said:

Thanks for response; for any practicing Catholics here; can you take communion with Celiac; I did so this morning and then thought “what did I just do”, the reading I’ve done said the Church has to use bread that contains some wheat, but they do have reduced wheat wafers.

what do priests with celiac do

trents Grand Master
trents
Posted
(edited)
On 12/25/2020 at 12:45 PM, Scott Adams said:

There is an official low gluten host made by Catholics using Codex wheat starch that is approved by the church. It is, I believe, under 20ppm.

This combined with taking GliadinX or some similar product might be the answer.

Edited by trents

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