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Celiac Symptoms Resurfacing after diagnosed

AriannaH
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DJFL77I Experienced
DJFL77I
Posted

stay away from oats

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trents
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 fo

trents
trents

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 eat

trents
trents

It is believed that about 10% of Celiacs react the same way to oats as they do to wheat, barley and rye. But there has always been this question mark surrounding that figure as to whether that happens

AriannaH Rookie
AriannaH
Posted
  • Author

Are gluten free oats ok? I get my lab test results back tomorrow for the blood test. I had them run everything that you'll said and anything she could think of. If nothing comes from that I am definitely trying the elimination diet but I never done one before. How do I do an elimination diet?

DJFL77I Experienced
DJFL77I
Posted

No oats 

AriannaH Rookie
AriannaH
Posted
  • Author

Ok. Thank you that might be what has been messing me up.

trents Grand Master
trents
Posted
(edited)

It is believed that about 10% of Celiacs react the same way to oats as they do to wheat, barley and rye. But there has always been this question mark surrounding that figure as to whether that happens because the oats that have been cross contaminated with one of those other grains. The only thing to do would be try eliminating oats from your diet for awhile. 

I have found that buckwheat (no relation to wheat) is about the easiest grain for my GI to handle. I eat gluten-free buckwheat groats for breakfast sometimes. I mention that in case you are looking for a breakfast cereal alternative. Technically, it's not a cereal grain but a seed that comes from a plant related to rhubarb. You might give it a try. It is also more nutritious than common cereal grains.

Edited by trents
Beverage Rising Star
Beverage
Posted

Yes, Trents is correct.  I reacted strongly to regular gluten free oats, various brands including Bob's gluten free which is processed at a dedicated facility.  Remember gluten free by legal definition is less than 20ppm, which is not low enough for Celiac's.  And since oats are easily cross contaminated in growing and harvesting and maybe transportation, even gluten free oats that meet the legal limit will not be ok for Celiac's.  I can eat them but they have to be Purity Protocol oats, which have standards for how far away from the bad gluten grains they are grown, etc.  You can search the internet for a list of brands that follow this stricter standard.  I like steel cut oats and get these from Amazon (gluten-free Harvest brand.):

https://www.amazon.com/gp/product/B01NBSHC7R/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I have never reacted to these and have them about once a month.

trents Grand Master
trents
Posted

I think it would be better to say that 20 ppm of gluten is sufficient for most but apparently not all celiacs. 

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DJFL77I Experienced
DJFL77I
Posted

So not even certified gluten free is lower than 20ppm?

DJFL77I Experienced
DJFL77I
Posted

Freshly baked stuff from dedicated gluten free bakeries has no gluten at all?

trents Grand Master
trents
Posted
(edited)
27 minutes ago, DJFL77I said:

So not even certified gluten free is lower than 20ppm?

Certified gluten-free products might be contain anything up to a maximum of 20 ppm. The "certified" part means this has been verified by an independent testing lab. Non certified products labeled simply "Gluten Free" is a less exacting designation and may refer only to the fact that gluten containing ingredients are not knowingly included in the product formulation. It does not rule out the possibility that there was unintentional cross contamination of some ingredients beforehand or during production. Some companies, like Bob's Red Mill, have their own testing lab and the analysis is done in house to determine if a product exceeds 20 ppm before they label it gluten free. The potential problem with that is that the reliability and accuracy of the testing method used may not be as good as what the independent labs use. So, the long and short of all this is that "Certified Gluten Free" can be more trustworthy than simply "Gluten Free." 

This is my understanding of the difference in the two designations but someone correct me if I am wrong.

Edited by trents
trents Grand Master
trents
Posted
25 minutes ago, DJFL77I said:

Freshly baked stuff from dedicated gluten free bakeries has no gluten at all?

Not necessarily. That would only be true if the ingredients themselves which they receive from their suppliers has not be cross contaminated. This is where individual sensitivities come into play. A very low amount of gluten, lower than 20 ppm, may still cause reactions for some celiacs but not for others. 20 ppm does not work for all Celiacs but for most.

RMJ Mentor
RMJ
Posted
2 hours ago, DJFL77I said:

So not even certified gluten free is lower than 20ppm?

If certified by GFCO.org it must be lower than 10ppm.

Sharona Apprentice
Sharona
Posted
7 hours ago, trents said:

Certified gluten-free products might be contain anything up to a maximum of 20 ppm. The "certified" part means this has been verified by an independent testing lab. Non certified products labeled simply "Gluten Free" is a less exacting designation and may refer only to the fact that gluten containing ingredients are not knowingly included in the product formulation. It does not rule out the possibility that there was unintentional cross contamination of some ingredients beforehand or during production. Some companies, like Bob's Red Mill, have their own testing lab and the analysis is done in house to determine if a product exceeds 20 ppm before they label it gluten free. The potential problem with that is that the reliability and accuracy of the testing method used may not be as good as what the independent labs use. So, the long and short of all this is that "Certified Gluten Free" can be more trustworthy than simply "Gluten Free." 

This is my understanding of the difference in the two designations but someone correct me if I am wrong.

In Canada they cannot put gluten free on the label even if there is no ingredients that have gluten in it. If the gluten free product is produced in the same location where other products that do contain gluten are made it is not gluten free. So you cannot trust it by just reading the label. Certified gluten free products would be your best choice. 

Neytiri Explorer
Neytiri
Posted
On 9/9/2020 at 5:13 PM, AriannaH said:

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?

Dear AriannaH, I suggest you to have a test in order to make sure if you are allergic to nickel as the number of people who have this type of serious allergy is recently skyrocketing. 

Sharona Apprentice
Sharona
Posted
On 9/22/2020 at 6:53 AM, Neytiri said:

Dear AriannaH, I suggest you to have a test in order to make sure if you are allergic to nickel as the number of people who have this type of serious allergy is recently skyrocketing. 

 

Hello AriannaH, 

FODMAP intolerance can create persistent digestive symptoms such as bloating, gas and diarrhea even after gluten is eliminated. This is because many other foods beyond wheat contain FODMAP sugars.

https://theceliacmd.com/top-5-reasons-for-persistent-symptoms-after-going-gluten-free/#:~:text=FODMAP intolerance can create persistent,beyond wheat contain FODMAP sugars.

Sharona Apprentice
Sharona
Posted

Dairy was also a problem for me when I was first diagnosed. I went off it for 2 years and slowly brought it back in my diet.

I was just recently told that being deficient if thiamine is a cause of pain in muscles. To remedy this I am going to take a Complex vitamin B vitamin and magnesium which helps it to digest.

Hope this helps.

trents Grand Master
trents
Posted
(edited)

Good advice. Many prepared foods, energy bars, protein bars, etc. contain inulins and alcohol sugars that are difficult for many people to break down.

By the way, Sharona, I love your name. Never heard that one before. Is it a family name?

Edited by trents
AriannaH Rookie
AriannaH
Posted
  • Author
14 minutes ago, Sharona said:

Dairy was also a problem for me when I was first diagnosed. I went off it for 2 years and slowly brought it back in my diet.

I was just recently told that being deficient if thiamine is a cause of pain in muscles. To remedy this I am going to take a Complex vitamin B vitamin and magnesium which helps it to digest.

Hope this helps.

Thanks!

knitty kitty Grand Master
knitty kitty
Posted

Earworm.... 

cyclinglady Grand Master
cyclinglady
Posted
10 hours ago, knitty kitty said:

Earworm.... 

😆

trents Grand Master
trents
Posted

What is earworm? A rock group or a performer? Sorry, I don't follow the Hollywood/entertainment industry scene. 

Sharona Apprentice
Sharona
Posted
2 minutes ago, trents said:

What is earworm? A rock group or a performer? Sorry, I don't follow the Hollywood/entertainment industry scene. 

I do not either but I remember this song when I was growing up. 

cyclinglady Grand Master
cyclinglady
Posted
2 minutes ago, trents said:

What is earworm? A rock group or a performer? Sorry, I don't follow the Hollywood/entertainment industry scene. 

Stuck song syndrome!  You can not get that catchy phrase out of your head.   MMMMMY Sharona!  Danced to that song a lot!  

trents Grand Master
trents
Posted
(edited)

I don't remember that song but I remember the one about beans in your ears. You look young Sharona so I'm sure that one is not in your memory. It's from the 1960s.

 

Edited by trents
Sharona Apprentice
Sharona
Posted
6 minutes ago, cyclinglady said:

Stuck song syndrome!  You can not get that catchy phrase out of your head.   MMMMMY Sharona!  Danced to that song a lot!  

 

9 minutes ago, Sharona said:

I do not either but I remember this song when I was growing up. 

 

7 minutes ago, trents said:

I don't remember that song but I remember the one about beans in your ears. You look young Sharona so I'm sure that one is not in your memory. It's from the 1960s.

 

I just looked up that song and wow that would definately never make you forget beans in your ears. 

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      How many grams is there in one slice of wheat bread?

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      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
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      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
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