What should I be taking/do to help during a reaction?

[Jvn7]

Hi,

I'm completely new to this forum and have not been diagnosed officially with celiac. However, through a very thorough elimination diet I found out GLUTEN was causing some pretty severe reactions in my body. I've had many tests done, more than I can count. I've also been in the emergency room several times. But for some reason no doctor has tested me for celiac yet. Anyways, my question is simply: does anyone know what works quickly FOR YOU when you accidentally get "glutened"? I eat out a lot with family because everyone is a foodie in my family but it's so hard to avoid contamination. Natural remedies perhaps? Over the counter medicines? So far I've found that fasting for a few days while drinking plenty of water helps but I can't always fast as it makes me very moody, among other things. Benedryl helps a little bit. My doctor gave me prednisone to see if it would help me feel better (this was before I knew it was gluten), and prednisone is the only thing so far that works the best. It's not good for long term use though? Help? Thank you for any input 🙏 I will continue to see doctors but any advice from those experienced might help.

-Jess

[trents]

Welcome to the forum, Jvn7!

In answer to your question, one which has been asked many times on this forum, we know of nothing that really facilitates recovery from an episode of glutening.

There is woeful ignorance in the medical community as a whole with regard to celiac disease. It's just not on the radar of most physicians, though there is a higher probabillity that a GI doc will think to test for celiac disease, when symptoms are present, than will a GP. Usually, you have to go armed with some knowledge and get a little assertive. There are specific blood antibody tests for celiac disease that can be ordered: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The most common test ordered is the tTG-IGA. The blood antibody test is the first stage of testing. The second stage would be an endoscopy with a biopsy of the small bowel lining. But with either kind of testing you would need to be consuming normal amounts of gluten daily for weeks leading up to the test. The equivalent of two slices of wheat bread daily for 6-8 weeks leading up to the blood antibody test and two weeks leading up to the endoscopy/biopsy. Otherwise the test results will likely show false negatives.

Celiac disease is an autoimmune reaction to gluten that damages the villi of the small bowel. This is the region where all of the nutrients from our food are absorbed. Damaged villi result in less efficient nutrient absorption which in turn leads to many health issues over time such as anemia, osteoporosis, and neurological disorders, just to name a few. So, it concerns me that you seem to be taking this problem so lightly. You are not the only person with a foodie family. Most all celiacs face that issue to one degree or another. It's a tough dynamic to deal with but our health is so important it must be addressed.

It is also possible you are not a celiac but have NCGS (Non Celiac Gluten Sensitivity) which produces many of the same symptoms as celiac disease but doesn't damage the small bowel villi.

It's unfortunate that you have not been tested but have already tried to eliminate gluten from your diet. If you are a celiac, the only safe choice is to commit to avoiding gluten for life. The social challenges can be daunting but there are ways to navigate it successfully if one is willing to be assertive and to live with some compromises in the social realm.

[Wheatwacked]

Gliaden X breaks down the accidental gluten in the stomach. Banner above. Others say it works well.

I keep my vitamin D at 80 ng/ml and at that level I have had gluten, but not been "gluttoned", though at 50 ng/ml in 2019 I would feel the effects, mostly sinus congestion and itchy eyes. Benadryl did not help me.

celiac disease causes malabsorption so don't assume you are getting enough vitamins and minerals, even when eating "healthy". Don't forget vitamin and mineral deficiencies just because of our American Diet like potassium. 100% DV is 4700 mg and is hard to do. Most of the US eat less than the DV for choline.

I was on prednisone for two years because like you it was the only thing that eased the pain to function. Pre GFD it took 30 mg a day. 8 years later I am down to 5mg, but that is due to secondary adrenal insufficiency caused by long steroid use, so unlikely I'll ever not have to take it. No regrets but I think if I had done GFD first? Occasional short term at lower dosage should be ok but give Original Alka Selzer a try. The bicarbonate soothes the stomach' and the aspirin reduces inflammation.

[trents]

  On 3/25/2022 at 11:53 AM, Wheatwacked said:

Gliaden X breaks down the accidental gluten in the stomach. Banner above. Others say it works well.

I keep my vitamin D at 80 ng/ml and at that level I have had gluten, but not been "gluttoned", though at 50 ng/ml in 2019 I would feel the effects, mostly sinus congestion and itchy eyes. Benadryl did not help me.

celiac disease causes malabsorption so don't assume you are getting enough vitamins and minerals, even when eating "healthy". Don't forget vitamin and mineral deficiencies just because of our American Diet like potassium. 100% DV is 4700 mg and is hard to do. Most of the US eat less than the DV for choline.

I was on prednisone for two years because like you it was the only thing that eased the pain to function. Pre GFD it took 30 mg a day. 8 years later I am down to 5mg, but that is due to secondary adrenal insufficiency caused by long steroid use, so unlikely I'll ever not have to take it. No regrets but I think if I had done GFD first? Occasional short term at lower dosage should be ok but give Original Alka Selzer a try. The bicarbonate soothes the stomach' and the aspirin reduces inflammation.

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Gliaden X might work for small amounts of gluten consumed such as in accidental cross contamination scenarios but it sounds like that at times the OP knowingly consumes larger amounts.

[Scott Adams]

This article may be helpful:

 

[Jvn7]

  On 3/25/2022 at 2:08 PM, trents said:

Gliaden X might work for small amounts of gluten consumed such as in accidental cross contamination scenarios but it sounds like that at times the OP knowingly consumes larger amounts.

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Knowingly consumes larger amounts of gluten? Uh no, no I don't. I try to avoid it at all costs, even if it means I don't eat. 

[Jvn7]

  On 3/25/2022 at 7:01 PM, Scott Adams said:

This article may be helpful:

 

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Thank you 🙏💓

[trents]

  On 3/25/2022 at 11:11 PM, Jvn7 said:

Knowingly consumes larger amounts of gluten? Uh no, no I don't. I try to avoid it at all costs, even if it means I don't eat. 

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"I eat out a lot with family because everyone is a foodie in my family but it's so hard to avoid contamination."

Sorry, I probably read too much into that. So, you're talking only about out at restaurants rather than eating at family members' homes? Yes, CC (cross contamination) is very difficult to avoid when eating out because you have little control over how things are prepared and handled back in the kitchen. In restaurant scenarios, GliadinX might help.

Edited March 26, 2022 by trents

[Jvn7]

  On 3/26/2022 at 12:32 AM, trents said:

"I eat out a lot with family because everyone is a foodie in my family but it's so hard to avoid contamination."

Sorry, I probably read too much into that. So, you're talking only about out at restaurants rather than eating at family members' homes? Yes, CC (cross contamination) is very difficult to avoid when eating out because you have little control over how things are prepared and handled back in the kitchen. In restaurant scenarios, GliadinX might help.

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Totally fine. Yeah it happens most of the time when my family/friends want to go out to eat, or even at their homes for dinners. I try to be careful and always ask questions, read labels etc. I'm at a point now to where I will bring my own food to their homes, as well as only ordering salads with no dressings at restaurants, or side dishes of veggies with nothing on it, or ordering nothing at all if they don't have those. Veggies and plain salads are usually my go-to lately because they make me feel better. Well, plant based diet I guess. I'm glad I found this website, there is a lot of helpful info. I'm a really bad cook but I need to find some gluten-free recipes. Thanks so much, I will look into GliadinX for a rescue option for CC (cross contamination). 

[trents]

  On 3/26/2022 at 5:02 AM, Jvn7 said:

Totally fine. Yeah it happens most of the time when my family/friends want to go out to eat, or even at their homes for dinners. I try to be careful and always ask questions, read labels etc. I'm at a point now to where I will bring my own food to their homes, as well as only ordering salads with no dressings at restaurants, or side dishes of veggies with nothing on it, or ordering nothing at all if they don't have those. Veggies and plain salads are usually my go-to lately because they make me feel better. Well, plant based diet I guess. I'm glad I found this website, there is a lot of helpful info. I'm a really bad cook but I need to find some gluten-free recipes. Thanks so much, I will look into GliadinX for a rescue option for CC (cross contamination). 

Expand Quote  

Sounds like your are coping appropriately, Jvn7.

[vampkitty2]

  On 3/25/2022 at 11:53 AM, Wheatwacked said:

Gliaden X breaks down the accidental gluten in the stomach. Banner above. Others say it works well.

I keep my vitamin D at 80 ng/ml and at that level I have had gluten, but not been "gluttoned", though at 50 ng/ml in 2019 I would feel the effects, mostly sinus congestion and itchy eyes. Benadryl did not help me.

celiac disease causes malabsorption so don't assume you are getting enough vitamins and minerals, even when eating "healthy". Don't forget vitamin and mineral deficiencies just because of our American Diet like potassium. 100% DV is 4700 mg and is hard to do. Most of the US eat less than the DV for choline.

I was on prednisone for two years because like you it was the only thing that eased the pain to function. Pre GFD it took 30 mg a day. 8 years later I am down to 5mg, but that is due to secondary adrenal insufficiency caused by long steroid use, so unlikely I'll ever not have to take it. No regrets but I think if I had done GFD first? Occasional short term at lower dosage should be ok but give Original Alka Selzer a try. The bicarbonate soothes the stomach' and the aspirin reduces inflammation.

Expand Quote  

 

  On 3/25/2022 at 4:35 AM, Jvn7 said:

Hi,

I'm completely new to this forum and have not been diagnosed officially with celiac. However, through a very thorough elimination diet I found out GLUTEN was causing some pretty severe reactions in my body. I've had many tests done, more than I can count. I've also been in the emergency room several times. But for some reason no doctor has tested me for celiac yet. Anyways, my question is simply: does anyone know what works quickly FOR YOU when you accidentally get "glutened"? I eat out a lot with family because everyone is a foodie in my family but it's so hard to avoid contamination. Natural remedies perhaps? Over the counter medicines? So far I've found that fasting for a few days while drinking plenty of water helps but I can't always fast as it makes me very moody, among other things. Benedryl helps a little bit. My doctor gave me prednisone to see if it would help me feel better (this was before I knew it was gluten), and prednisone is the only thing so far that works the best. It's not good for long term use though? Help? Thank you for any input 🙏 I will continue to see doctors but any advice from those experienced might help.

-Jess

Expand Quote  

Hi Jess,

Baking soda is also helpful. 1/4-1/2 teaspoon in water. Stir for 30-60 seconds to fully dissolve and drink.  This is sodium bicarbonate the same things in Tums without the flavorings. The main thing you need is to get diligent about your food choices. If eating out, make sure they have gluten free items and stick to those. Know the restaurants you don’t get sick from.  Sometimes going through this process brings up repressed emotional eating issues too. We are so emotionally connected to the food we eat and it’s customs. Focus on self care at this time. The universe is forcing you to look at this area. It made me look at all the times I used to food ( desserts) as a treat or a Starbucks to get out of bed in the morning. Just my take. Good luck to you. It’s a tough road but we all have travelled on it. Thank god for resources like this so we can help each other!! ❤️
 

Jessica 

[Jvn7]

  On 3/26/2022 at 9:25 PM, vampkitty2 said:

 

Hi Jess,

Baking soda is also helpful. 1/4-1/2 teaspoon in water. Stir for 30-60 seconds to fully dissolve and drink.  This is sodium bicarbonate the same things in Tums without the flavorings. The main thing you need is to get diligent about your food choices. If eating out, make sure they have gluten free items and stick to those. Know the restaurants you don’t get sick from.  Sometimes going through this process brings up repressed emotional eating issues too. We are so emotionally connected to the food we eat and it’s customs. Focus on self care at this time. The universe is forcing you to look at this area. It made me look at all the times I used to food ( desserts) as a treat or a Starbucks to get out of bed in the morning. Just my take. Good luck to you. It’s a tough road but we all have travelled on it. Thank god for resources like this so we can help each other!! ❤️
 

Jessica 

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Oh, thank you so much! I didn't know that about baking soda, thanks for the tip! I know, it's hard and I'm just thankful to have resources such as this.

[vampkitty2]

  On 3/26/2022 at 10:03 PM, Jvn7 said:

Oh, thank you so much! I didn't know that about baking soda, thanks for the tip! I know, it's hard and I'm just thankful to have resources such as this.

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Just make sure you hydrate through out the day after having the baking soda it’s salty and drying. Back to researching gluten free mascara! Lol 

[Beverley Ann Johnson]

  On 3/25/2022 at 4:35 AM, Jvn7 said:

Hi,

I'm completely new to this forum and have not been diagnosed officially with celiac. However, through a very thorough elimination diet I found out GLUTEN was causing some pretty severe reactions in my body. I've had many tests done, more than I can count. I've also been in the emergency room several times. But for some reason no doctor has tested me for celiac yet. Anyways, my question is simply: does anyone know what works quickly FOR YOU when you accidentally get "glutened"? I eat out a lot with family because everyone is a foodie in my family but it's so hard to avoid contamination. Natural remedies perhaps? Over the counter medicines? So far I've found that fasting for a few days while drinking plenty of water helps but I can't always fast as it makes me very moody, among other things. Benedryl helps a little bit. My doctor gave me prednisone to see if it would help me feel better (this was before I knew it was gluten), and prednisone is the only thing so far that works the best. It's not good for long term use though? Help? Thank you for any input 🙏 I will continue to see doctors but any advice from those experienced might help.

-Jess

Expand Quote  

I have the same problem.  I did the celiac blood test last year and it came back negative, they are not always accurate.  I suffer from constant bouts of nausea, skin rash, stomach and intestinal problems, bloating, and gas after eating.  I am currently on gluten free fodmap diet.  There is not much you can do when you get a bad reaction to gluten, I vomit, get muscle pain and headache sometimes and just wait for it all to pass.  A hot water bottle on the tummy helps.  Dr diagnosed me with IBS but guessing celiac or gluten sensitivity, they often go hand in hand and probably have small intestinal fungal overgrowth due to the fact that I am vegetarian.  Try one tablespoon of apple cider vinegar with a little water before each meal, it helps regulate the low acid levels or if you think you have high acid levels baking soda with water will help.  Eating out could be a challenge and when cooking at home make your own clean space free from family members who slice that gluten bread!  Good luck, hope it helps.

 

 

[Wheatwacked]

  On 3/26/2022 at 5:02 AM, Jvn7 said:

Veggies and plain salads are usually my go-to lately because they make me feel better. Well, plant based diet I guess.

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Eating foods that make you feel better. Good

Plant based diet, not so good.  In addition, for Celiac Disease, when you eat gluten free there are food fortifications that are required in not gluten free processed food but are not in gluten free foods.  In addition to the list on this website, consider iodine (in the US population iodine intake deceased and choline (eggs, meat, dairy, fish) deficiency...

7 Nutrients That You Can’t Get from Plants

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     Iodine and Iodine Deficiency: A Comprehensive Review of a Re-Emerging Issue

     In the total U.S. military population, from 1997–2015, the incidence of clinically diagnosed iodine deficiency substantially increased in males but overall was more common in females and racial minorities [24]. Hypothyroidism, a symptom of severe iodine deficiency, is present in approximately 5% of the U.S. population. 

Other consumer practices that may contribute to recent declines in dietary intake of iodine include veganism and some forms of vegetarianism

 

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Edited September 17, 2024 by Wheatwacked
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