Strange Problematic Foods for a Celiac

[KatrinaB]

Good morning everyone,

I am new to this site and excited to communicate with fellow sufferers and read amazing articles and recipes.

My diet is extremely limited to :-

All meat, prunes (the only fruit I can eat), all gluten free products that don't contain pea protein, most dairy - yogurts can be a problem, soya custard, complan (my life saver), tea, coffee and hot chocolate.  That's it!

However, under no circumstances can I touch fruit and vegetables of any kind as the physical affects are devastating and wondered if anyone else experienced this or any other food groups not listed as a problem for celiacs.

in the past, m9re than once, I have had to be carried out of the office to a cab as the pain was so dreadful I couldn't even walk.

I would be very interested in learning of others' experience with unusual problem foods, cosmetics  etc.

Have a lovely weekend.

Warm regards,

Katrina

 

[Wheatwacked]

i read that pea protein is MSG. 

 

Most patients with histamine-related issues do not tolerate legumes well. Pea protein is likely high in histamine or other amines. It may also serve as a histamine liberator - in other words, it could release the body's existing histamine.  https://foodisgood.com/is-pea-protein-high-in-histamine/#:~:text=Most patients with histamine-related,release the body's existing histamine.

 

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  • What Foods Are High Histamine And Most Problematic?
  • Fruit: Citrus fruits, strawberries, bananas, pineapple, pears.
  • Vegetables: Eggplant, avocado, tomatoes, olives, beans.
  • Dairy: Cheese, yogurt, processed cheese.
  • Protein: Canned, smoked, dried meats/fish. Tuna, mackerel, anchovies, shellfish. Sausage, lunchmeat, liver.  Avoid eggs except in small amounts baked in products.
  • Grains: avoid bleached wheat flour
  • Flavor: vinegar, soy sauce, hot spices.
  • Fermented Foods: Beer, Wine, Pickled foods, Kombucha,Sauerkraut, Kimchi
  • Drinks: coffee, alcohol, black tea, orange juice, lemon water
  • https://theceliacmd.com/the-low-histamine-diet-what-is-it-and-does-it-work/

   

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[trents]

It is very common, even  typical, for celiacs to develop intolerance to a number of non gluten foods. It has to do with the leaky gut syndrome that comes along with celaic disease. Also, as others have mentioned, you should look into histamine intolerance and MCAS (Mast Cell Activation Syndrome).

[Scott Adams]

Welcome to the forum!

Can I ask how long you've been on a gluten-free diet? The reason I ask is because I also had many different food intolerances at the time of my diagnosis, as @trents mentioned this was likely due to issues with leaky gut. After ~2-3 years I was able to slowly add most of these foods back into my diet, because my gut healed (with the exception of gluten of course!). 

[KatrinaB]

  On 3/11/2023 at 11:19 PM, Scott Adams said:

Welcome to the forum!

Can I ask how long you've been on a gluten-free diet? The reason I ask is because I also had many different food intolerances at the time of my diagnosis, as @trents mentioned this was likely due to issues with leaky gut. After ~2-3 years I was able to slowly add most of these foods back into my diet, because my gut healed (with the exception of gluten of course!). 

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Hi Scott,

My story is complicated.  I was diagnosed as IBS over 25 years ago and only recently discovered at a hospital visit that I was diagnosed as categorically celiac in 2012 but no-one told me!

I was gluten free for 8  months the then started getting symptoms again about a month ago and stupidly returned to normal diet resulting in agonising abdominal and rectal pains and other nasties.

As of yesterday, I have returned to complan, meat, soya custard, gluten free stuffing and cheese and that is it.  Fruit and veg are as harmful to me as gluten apart from prunes.

I either loathe all gluten free foods or can't have them as they contain pea protein and I can't eat peas. Plus the cost should be illegal penalising sick people.

Needless to say I am depressed and angry but cannot tolerate the pain.  Celiac is a truly awful condition plus I have a horrible suspicion I have both Ibs and celiac.

Kind regards,

Katrina

 

[KatrinaB]

  On 3/11/2023 at 5:26 AM, trents said:

It is very common, even  typical, for celiacs to develop intolerance to a number of non gluten foods. It has to do with the leaky gut syndrome that comes along with celaic disease. Also, as others have mentioned, you should look into histamine intolerance and MCAS (Mast Cell Activation Syndrome).

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Hi trents,

That is so interesting thank you so much for the feedback.  I have not heard of the leaky gut or histamine connection so will look into those.

Kind regards,

Katrina

[KatrinaB]

  On 3/11/2023 at 1:38 AM, Wheatwacked said:

i read that pea protein is MSG. 

 

Most patients with histamine-related issues do not tolerate legumes well. Pea protein is likely high in histamine or other amines. It may also serve as a histamine liberator - in other words, it could release the body's existing histamine.  https://foodisgood.com/is-pea-protein-high-in-histamine/#:~:text=Most patients with histamine-related,release the body's existing histamine.

 

•  

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Hi wheatwhacked,

I can't eat peas so was furious to see that pea protein is in the only gluten free products I like the taste of.

Just seems to be one obstacle after another for celiacs.

Kind regards,

Katrina 

 

[nutritionguy]

  On 3/11/2023 at 1:19 AM, KatrinaB said:

Good morning everyone,

I am new to this site and excited to communicate with fellow sufferers and read amazing articles and recipes.

My diet is extremely limited to :-

All meat, prunes (the only fruit I can eat), all gluten free products that don't contain pea protein, most dairy - yogurts can be a problem, soya custard, complan (my life saver), tea, coffee and hot chocolate.  That's it!

However, under no circumstances can I touch fruit and vegetables of any kind as the physical affects are devastating and wondered if anyone else experienced this or any other food groups not listed as a problem for celiacs.

in the past, m9re than once, I have had to be carried out of the office to a cab as the pain was so dreadful I couldn't even walk.

I would be very interested in learning of others' experience with unusual problem foods, cosmetics  etc.

Have a lovely weekend.

Warm regards,

Katrina

 

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Hi Katrina,

I would like to suggest the following book if you have not seen it:  "Real Life With Celiac Disease", Melinda Dennis, MS, RD, LDN, and Daniel A. Leffler, MD, MS, The Celiac Center at Beth Israel Deaconess Medical Center (associated with Harvard).  The book indicates that there are many vegetables and fruits that celiacs can have trouble with, and some vegetables and fruits that celiacs are more likely to tolerate.  According to this reference, the following fruits are deemed intestinal friendly:  strawberry, raspberry, blueberry, .......  And the following vegetables are deemed intestinal friendly:   green pepper, potatoes, spinach, green beans, cucumber tomatoes,...... I haven't listed all of the suggested vegetables and fruits, but it may be worth your time to look at the book and see if any of their recommendations may be of value to you...:

 

Chapter 37:  Maladsorption of Fructose, Lactose, and Related Carbohydrates

" The human intestine's ability to absorb fructose and several other short-chain carbohydrates is relatively limited.  These carbohydrates include fermentable oligosaccharides, disaccharides, monosaccharides, and polls (FODMAPs).  The FODMAPs are fructose(apples, pears, honey), fructans...., galactans (cabbage, legumes), lactose... and polyol sweeteners that include sorbitol (peaches, plums, apricots, nectarines, cherries) xylitol, mannitol (cauliflower, mushrooms), and isomalt, which are also found in many sugar-free products.

It is normal to not absorb FODMAPS well.  However, when you have a gastrointestinal disorder such as celiac disease or irritable bowel syndrome, this incomplete absorption can cause gastrointestinal symptoms.....FODMAPS...are rapidly fermented by bacteria, producing gas and short chain fatty acids, which typically cause bloating, gas, cramping, and diarrhea.  We see many patients with celiac disease who appear to be following strict GFD (gluten free diet) but have persistent symptoms that are related to ingesting FODMAPs.    Fortunately, these symptoms can often be relieved by making specific dietary changes."

[KatrinaB]

Thank you so much for this nutritionguy.  Really appreciate it and I will look into it.

 

Warm regards.

 

Katrina

[C.A.]

Hello, Katrina! I sympathize with your food intolerances. This is very similar to what I’ve experienced as well. I’ve been reduced to eating mostly rice, fish/poultry/meat, no spices, and a limited range of fruits and vegetables. Only decaf coffee and no tea. Then, I came across a book called something like The Healthier I Ate, The Sicker I Became...about salicylate intolerance. Many, many fruits and vegetables, teas, regular coffee, and spices are high in salicylates. After looking at charts with levels of salicylates, salicylate content seemed proportional to the foods that bothered me. My intolerance has worsened in the last five years, and my main symptoms are blood vessel inflammation (eyes, small vessels in hands or legs) and purpura. I’ve talked with a rheumatologist about the possibility that this is Behcets disease, and I wonder if Behcets, also known as the Silk Road Disease, has not yet been recognized as a disease connected to salicylate problems, given the foods/drinks predominant in the “Silk Road” region. There are some vegetables and a few fruits that don’t bother me--mostly cabbages, certain lettuces, pears. But the greater the salicylate content, the more likely a reaction. Somewhere I read that supplementing with a Xylanase enzyme can be helpful in breaking down salicylates. I’ve tried that with moderate success, but the best solution for me has been to avoid salicylate-rich foods (those in the moderate, high, and very high range).

[Scott Adams]

  On 3/12/2023 at 12:25 PM, KatrinaB said:

Hi Scott,

My story is complicated.  I was diagnosed as IBS over 25 years ago and only recently discovered at a hospital visit that I was diagnosed as categorically celiac in 2012 but no-one told me!

I was gluten free for 8  months the then started getting symptoms again about a month ago and stupidly returned to normal diet resulting in agonising abdominal and rectal pains and other nasties.

As of yesterday, I have returned to complan, meat, soya custard, gluten free stuffing and cheese and that is it.  Fruit and veg are as harmful to me as gluten apart from prunes.

I either loathe all gluten free foods or can't have them as they contain pea protein and I can't eat peas. Plus the cost should be illegal penalising sick people.

Needless to say I am depressed and angry but cannot tolerate the pain.  Celiac is a truly awful condition plus I have a horrible suspicion I have both Ibs and celiac.

Kind regards,

Katrina

 

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So it sounds like you've not been great at following a gluten-free diet, and you were eating gluten last month. The only way to heal and improve your situation is going to be with a 100% gluten-free diet going forward. After months or a couple of years some of these additional food intolerance issues you now have may go away, as your leaky gut heals.

This article is what you need now:

 

[C.A.]

  On 3/13/2023 at 2:32 PM, C.A. said:

Hello, Katrina! I sympathize with your food intolerances. This is very similar to what I’ve experienced as well. I’ve been reduced to eating mostly rice, fish/poultry/meat, no spices, and a limited range of fruits and vegetables. Only decaf coffee and no tea. Then, I came across a book called something like The Healthier I Ate, The Sicker I Became...about salicylate intolerance. Many, many fruits and vegetables, teas, regular coffee, and spices are high in salicylates. After looking at charts with levels of salicylates, salicylate content seemed proportional to the foods that bothered me. My intolerance has worsened in the last five years, and my main symptoms are blood vessel inflammation (eyes, small vessels in hands or legs) and purpura. I’ve talked with a rheumatologist about the possibility that this is Behcets disease, and I wonder if Behcets, also known as the Silk Road Disease, has not yet been recognized as a disease connected to salicylate problems, given the foods/drinks predominant in the “Silk Road” region. There are some vegetables and a few fruits that don’t bother me--mostly cabbages, certain lettuces, pears. But the greater the salicylate content, the more likely a reaction. Somewhere I read that supplementing with a Xylanase enzyme can be helpful in breaking down salicylates. I’ve tried that with moderate success, but the best solution for me has been to avoid salicylate-rich foods (those in the moderate, high, and very high range).

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I also wanted to add that I recently had genetic testing done for Hereditary Alpha Tryptasemia, due to having a consistently elevated tryptase level, but not other abnormalities (normal methylhistamine, prostaglandin, leukotrienes, etc.). It turns out I do have a gene copy indicative of HaT. Interestingly, this HaT has been connected to food allergies and intolerances, anaphylactic problems, dysphagia, connective tissue problems, and other gastrointestinal issues (among other things). This might be another thing to look into. My sense is that research into the HaT gene is still in the early stages. 

[Wheatwacked]

  On 3/11/2023 at 1:19 AM, KatrinaB said:

prunes (the only fruit I can eat

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I just discovered that if I drink Red Bull it lowers my morning glucose test. Fruits raise it. Red Bull has sugar. Fruit has fructose. 

Sugar: The Bitter Truth

[trents]

Fructose is one of the sugars.

[nutritionguy]

  On 3/15/2023 at 3:51 PM, Wheatwacked said:

I just discovered that if I drink Red Bull it lowers my morning glucose test. Fruits raise it. Red Bull has sugar. Fruit has fructose. 

Sugar: The Bitter Truth

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"Niacin is the generic name for nicotinic acid (pyridine-3-carboxylic acid), nicotinamide (niacinamide or pyridine-3-carboxamide), and related derivatives, such as nicotinamide riboside [1-3]."  A combination in the body of nicotinic acid and chromium results in a compound called "glucose tolerance factor" (GTF).  It does not at all surprise me that Red Bull lowers your blood sugar despite having simple sugars in it.

[Mooch4056]

  On 3/11/2023 at 1:19 AM, KatrinaB said:

Good morning everyone,

I am new to this site and excited to communicate with fellow sufferers and read amazing articles and recipes.

My diet is extremely limited to :-

All meat, prunes (the only fruit I can eat), all gluten free products that don't contain pea protein, most dairy - yogurts can be a problem, soya custard, complan (my life saver), tea, coffee and hot chocolate.  That's it!

However, under no circumstances can I touch fruit and vegetables of any kind as the physical affects are devastating and wondered if anyone else experienced this or any other food groups not listed as a problem for celiacs.

in the past, m9re than once, I have had to be carried out of the office to a cab as the pain was so dreadful I couldn't even walk.

I would be very interested in learning of others' experience with unusual problem foods, cosmetics  etc.

Have a lovely weekend.

Warm regards,

Katrina

 

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for me soy is an issue Soy sometimes has a protein that can mimmick gluten .. perhaps if the vegtable was cross cotaminated with soy .. soy and corn will make me sick becuase of the similat proitens to gluten   this video explains it better than me

 

[Scott Adams]

So I believe Dr. Osborne is a chiropractor, not an MD, and he makes all sorts of claims about foods that celiacs should not eat, like rice, corn, and other grains. For some people his view might be helpful, but for most celiacs eating those grains will not be an issue.

[nutritionguy]

Interesting point.  As an individual with both celiac and type 1 diabetes, I have personally found that corn gives me significant problems with both blood sugar control and other side effects.  Corn is not a grain...It is made of polymers of fructose, which when broken down, is metabolized to products different than those of broken down grains.  As a consequence, I keep away from corn...but I do include plenty of whole grain brown rice in my diet.

[Scott Adams]

I think what USA farmers have done to corn may be problematic for lots of people, and especially diabetics. I wonder how some of the more ancient varieties that you can still get in Mexico would compare? It looks totally different:

https://www.veramexicana.com/article/corn-ancient-grains/ 

[trents]

https://ask.usda.gov/s/article/Is-corn-a-grain-or-a-vegetable

"Corn can be considered either a grain or a vegetable, based on when it is harvested."

[KatrinaB]

  On 3/15/2023 at 9:09 PM, nutritionguy said:

Interesting point.  As an individual with both celiac and type 1 diabetes, I have personally found that corn gives me significant problems with both blood sugar control and other side effects.  Corn is not a grain...It is made of polymers of fructose, which when broken down, is metabolized to products different than those of broken down grains.  As a consequence, I keep away from corn...but I do include plenty of whole grain brown rice in my diet.

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I can't eat corn either.  Leaves me with excruciating abdominal and rectal pain

[Elizabeth Butler]

  On 3/11/2023 at 1:19 AM, KatrinaB said:

Good morning everyone,

I am new to this site and excited to communicate with fellow sufferers and read amazing articles and recipes.

My diet is extremely limited to :-

All meat, prunes (the only fruit I can eat), all gluten free products that don't contain pea protein, most dairy - yogurts can be a problem, soya custard, complan (my life saver), tea, coffee and hot chocolate.  That's it!

However, under no circumstances can I touch fruit and vegetables of any kind as the physical affects are devastating and wondered if anyone else experienced this or any other food groups not listed as a problem for celiacs.

in the past, m9re than once, I have had to be carried out of the office to a cab as the pain was so dreadful I couldn't even walk.

I would be very interested in learning of others' experience with unusual problem foods, cosmetics  etc.

Have a lovely weekend.

Warm regards,

Katrina

 

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I’m sorry to hear about your limited diet. That’s got to be extremely tough. Corn isn’t a vegetable it’s a grass..and almost 99.99 percent of corn served on a dinner plate is GMO. So it’s got cross dna with other plants. Possibly making corn have a “gluten” response.  On that same subject GMO fruits and veggies can have various effects on allergy suffers. If it were me and I was needing and desiring to expand my diet I would consider ordering heritage seeds and try growing a few and eating them and seeing if you have a reaction as long as it’s not anaphylaxis as your response!