Celiac Symptoms Resurfacing after diagnosed

[AriannaH]

I have had Celiac disease since I was 10 and my symptoms of Celiac disease slowly started to fade into nothingness. It was amazing the first day I woke up and my stomacg did not hurt and I did not throw up. But since last year at 17 my symptoms started resurfacing and my doctor does not know what to do. My GI said all my Celiac panels were normal but my symptoms are recurring. The recent symptoms are not as bad as they were when I was little. I have followed a strict gluten free diet and I am not sure why my symptoms are resurfacing. Is anyone else facing this problem? Is there something I can do?

[knitty kitty]

AriannaH, 

It would be helpful if you let us know which symptoms are returning, what your diet includes, and whether you've been checked for vitamin and mineral deficiencies.  Even on a gluten free diet, malnutrition may be a problem.  

Knitty Kitty

 

[trents]

Welcome, Arinana!

1. Have you recently had an endoscopy with intestinal biospsy to check the condition of your small bowel villi? We have a number of forum members whose blood work is negative for Celiac Disease but a biopsy showed damaged villi. 

2. Have you checked all the food labels lately of any processed/prepared foods that your eat? Do you take any medications or supplements and have you checked to make sure they are gluten free? Companies can and do change their formulations and what was once gluten-free may no longer be so.

3. Could your GI distress be caused by something besides gluten? Because celiac disease invariably results in a dysfunctional immune system, most celiacs develop allergies/intolerances to one or more non gluten containing foods over time.

[AriannaH]

I have vitamin b12 and vitamin d deficiency, my symptoms are mainly constipation, stomach pain and throwing up. I have been checked for other deficiencies. My diet generally includes gluten free noodles, chicken, hamburger, carrots, peas, corn, pepper, onions and cupforcup  flour made things that are homemade. I have gluten free pans too.

[AriannaH]

1. I did not think to try an endoscopy since I was diagnosed but I will talk to my doctor about it.

2. I have checked all of the labels and if the dont say gluten free I dont eat them. I even have my shampoo gluten free. As I have found I am super sensitive. 

3. I get tested for new allergies and intolerance with blood test yearly because I have a serve nut allergy and my father developed an allergy to all uncooked fruits and vegetables as he grew older.

Thank you for the response.

[knitty kitty]

AriannaH, 

Doctors seem to check only Vitamin B12 and Vitamin D.  Other vitamin deficiencies might be a factor.  Which other vitamin and mineral deficiencies were checked? 

The gluten free noodles and cup for cup flour replacement is of note to me.  Gluten free products are not required to be enriched with vitamins lost in processing like gluten containing counterparts are.  

A diet with lots of carbohydrates can lead to a deficiency of thiamine.  Thiamine is needed to turn carbohydrates into energy. 

Without enough thiamine, you might be developing "gastrointestinal beriberi".  Symptoms of low thiamine are stomach pain, throwing up and constipation.  

You should discuss this possibility with your doctor soon.  An erythrocyte transketolase test (or a blood test for thiamine deficiency) may detect a thiamine deficiency.  Prolonged thiamine deficiency can lead to further health problems.  Thiamine deficiency does not occur only in alcoholism like some narrow minded doctors think.  High dose Thiamine can correct deficiency.  Also check for magnesium deficiency.  Thiamine and magnesium work together.  

Discuss with your doctor the benefits of supplementing with a B-Complex vitamin supplement.  The eight B vitamins all work together.  Supplementing just one can throw the others out of balance.

I'm not a doctor.  I'm a microbiologist who has experienced thiamine deficiency.

Hope this helps!

 

 

 

[AriannaH]

This definitely helps will ask my doctor. Thank you so much. My doctor only checked for the main ones such as vitamin b, d, a, and c along with iron. I will definitely check for these thank you.

[knitty kitty]

AriannaH, 

Keep us posted on your progress!  

Best wishes,

Knitty Kitty

[AriannaH]

I will thank you so much

[GFinDC]

Hi AriannaH,

I suggest you try an elimination diet.  Try eliminating some food groups and see if your symptoms improve.  I suggest starting by eliminating all baked goods and processed foods.  Any of these could possibly have some kind of minor cross contamination.

It's also possible you have developed a food reaction to some other ingredient beyond gluten ( wheat, rye and barley).  Some of us react to oats also.  Other react to dairy, nightshades, corn etc.  These food reactions are best found by an elimination diet IMHO.

Being low on Vitamin D and B-12 makes me think you are getting gluten in your diet somehow.  It can help to take a close look at any possible gluten sources.  A good elimination diet assumes every food is suspect and makes them prove they are ok to eat.  Don't assume any food is safe, but prove it instead.  That includes drinks and supplements and spices.

[AriannaH]

1 minute ago, GFinDC said:

Hi AriannaH,

I suggest you try an elimination diet.  Try eliminating some food groups and see if your symptoms improve.  I suggest starting by eliminating all baked goods and processed foods.  Any of these could possibly have some kind of minor cross contamination.

It's also possible you have developed a food reaction to some other ingredient beyond gluten ( wheat, rye and barley).  Some of us react to oats also.  Other react to dairy, nightshades, corn etc.  These food reactions are best found by an elimination diet IMHO.

Being low on Vitamin D and B-12 makes me think you are getting gluten in your diet somehow.  It can help to take a close look at any possible gluten sources.  A good elimination diet assumes every food is suspect and makes them prove they are ok to eat.  Don't assume any food is safe, but prove it instead.  That includes drinks and supplements and spices.

Thanks I will try this too thank you so much

 

[DJFL77I]

Try eating nothing at all processed or packaged.. . Only fresh

[Beverage]

Any remodeling going on in your home? 

[AriannaH]

No

[cyclinglady]

27 minutes ago, Beverage said:

Any remodeling going on in your home? 

Good question!  

[trents]

What is the thought behind the remodeling question? What am I missing?

[Beverage]

1 hour ago, trents said:

What is the thought behind the remodeling question? What am I missing?

Plaster, wall board, glued wood products like chip board or plywood, can all possibly contain wheat.  I got hit hard when we remodeled and we had to knock holes into the old lath & plaster walls in our 1940's home.  That find dust stays in the air and settles on everything.  

[trents]

Yeah, I was thinking that would be what you were driving at but just wanted to make sure I wasn't missing something else.

[cyclinglady]

My house is 100 years old.  Lots of plaster!  

[DJFL77I]

10 hours ago, cyclinglady said:

My house is 100 years old.  Lots of plaster!  

And ghosts

[Bebygirl]

On 9/9/2020 at 11:32 AM, AriannaH said:

I have vitamin b12 and vitamin d deficiency, my symptoms are mainly constipation, stomach pain and throwing up. I have been checked for other deficiencies. My diet generally includes gluten free noodles, chicken, hamburger, carrots, peas, corn, pepper, onions and cupforcup  flour made things that are homemade. I have gluten free pans too.

Gluten free pans? Am I missing something, even if I use different utensils as my husband, does this mean I could still be cross contaminated by using utensils that I have washed, yet used to have gluten items in it? Now I am really concerned, I keep getting glutened here and there, but mostly from wrong information and not adhering to each and every item being marked gluten-free.

[DJFL77I]

I have gluten free sneakers

[trents]

39 minutes ago, Bebygirl said:

Gluten free pans? Am I missing something, even if I use different utensils as my husband, does this mean I could still be cross contaminated by using utensils that I have washed, yet used to have gluten items in it? Now I am really concerned, I keep getting glutened here and there, but mostly from wrong information and not adhering to each and every item being marked gluten-free.

There shouldn't be much of a concern there as long as things are washed thoroughly and you don't drink the dish water. Some have expressed concern about using the same cast iron skillets as gluten eaters in the family but I don't know.

[Bebygirl]

On 9/19/2020 at 2:22 PM, trents said:

There shouldn't be much of a concern there as long as things are washed thoroughly and you don't drink the dish water. Some have expressed concern about using the same cast iron skillets as gluten eaters in the family but I don't know.

Drinking the dish water, lol, thanks for the laugh..ok, so I just wanted to make sure I wasn’t cross contaminating myself, I did notice that it does matter tho what I put on my skin, I recently got seborric dermatitis from using a toner that had gluten in it, really people this whole industry is greedy but for why else would you use such a product these days, despite knowing the problem.

[Sharona]

On 9/9/2020 at 12:21 PM, AriannaH said:

I will thank you so much

I had to eliminate dairy when I was first diagnosed. I went off for two years on my own and healed my intestines really well and can now have dairy and cheese. I still like to eliminate some so I drink oat milk by earth's Own that is gluten free. You should eat gluten free oats as checking this oats do get cross- contamination like other things being processed into foods.