Developing other food intolerances after Celiac diagnosis

[Crackerjack]

I was diagnosed with celiac disease after suffering unexplained and fairly random debilitating abdominal pain  over the past year. I was diagnosed 3 months ago, and started a struct Gluten free diet , and apart from a few initial mishaps ( gravy and a couple of other things) my symptoms have been under control. 
however , I seem to be developing other unexplained food ‘intolerances’ and am having reactions to other foods which Ive never had a priblem with before. The issue Im having  is its so hard to identify what food is causing the problem. One seems to be Lactose, so Im now on Lactose free milk, all good, but I ‘think’ Im now reacting badly to any foods with spices in - after both a curry ( home cooked!) AND a Chilli ( home cooked) Ive woken up with quite severe stomach pains snd diarhoea.

Does this sound really odd? Or is it possible that being Celiac I now am going to have to watch out for other developing food intolerances? Im starting to get paranoid about everything I eat, and its causing me so much stress. 

[trents]

Welcome to the forum, @Crackerjack!

Nothing you describe is unusual in the celiac community.

Dairy intolerance, either from the sugar component (lactose) or the protein casein, is very common among celiacs. And about 10% of celiacs cross react to oats (even gluten free oats) because the oat protein avenin is similar in structure to gluten.

Spices are typically not gluten free since they are often ground and processed on the same equipment as are wheat products. So, there is this common phenomenon with a lot of foods like that that are "naturally gluten free" we call "cross contamination" or "CC" for short. There are spice lines that are gluten free and people have posted about them on this forum from time to time. You might do a search using the forum tool for this. 

In addition, we tend to become less tolerant to smaller gluten exposures over time as we go deeper into the gluten free diet.  

I am including this link which might be helpful: 

 

[KodiakCupZuko]

What kind of chili? 
 

Here are a few ingredients to look out for: 

Beef/Chicken Broth: yeast 

Sauces: Vinegar/Yeast 

salad dressing 

maltodextrin 

“Natural Flavors” - proprietary information 

“Vegetable flavoring” -  proprietary information 

Vegetable Synthetic Additives 

Most vitamins, vitamins must be NSF certified or certified with less than 5ppm. Capsules are the worst don’t even touch normal vitamins 

Items made in a factory with cross contamination non-certified foods 

Coffee grounds and beans - often made with flavorings. Additives in ground coffee often made with gluten “flowing agent” to prevent mold growth. Order from Tierra Farms, it’s the only certified coffee company on the market. I drink my coffee for $1 a day 

lipstick, lip gloss, concealer, shampoo, soap. 

Gum additives/Mints 

french fries often coated in flour 

chili often made with flour 

yeast and flowing agents in seasonings 

There’s more but that’s all I have for now. 

stick with Celiac foundation certified products or anything less than 10ppm. Or just eat raw foods, there’s no other option honestly..

 

You’re not paranoid, gluten is in literally everything. 

[GardeningForHealth]

I would like to see this topic "increasing food intolerances over time in Celiacs" studied scientifically, as it seems to be so common, yet I've never seen any studies on pubmed about it.

[knitty kitty]

6 hours ago, GardeningForHealth said:

I would like to see this topic "increasing food intolerances over time in Celiacs" studied scientifically, as it seems to be so common, yet I've never seen any studies on pubmed about it.

It has to do with Mast Cell Activation Syndrome.  

Mast cells become activated when the immune or autoimmune response is triggered, as in Celiac Disease or a cold.  If stimulated for long enough, frequently enough, mast cells develop "itchy trigger fingers" and release infection fighting histamine at the least provocation.  High levels of histamine cause health problems.  

Removing irritating foods by following a low histamine Paleo diet, like the Autoimmune Protocol Diet, helps get the Mast cells to calm down and quit being so sensitive.  A few weeks on the AIP diet improves symptoms by reducing inflammation and allowing for intestinal healing.  The intestine needs time to regrow damaged villi.  

Yes, certain spices can cause mast cells to release histamine.  These include peppers like chili peppers used in chili and curry.  Mint can do the same, as can coffee.

 

Mast cells are associated with the onset and progression of celiac disease

https://pubmed.ncbi.nlm.nih.gov/27619824/

And...

Mast Cells in Gastrointestinal Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

[Wheatwacked]

     All the time you were eating gluten, it was activating an opiod effect, numbing your body not only to the pain caused by gluten, but also other foods that were bothering you but you didn't feel it.  Without that numbing effect of the non-metabolized gliadin molecules with opioid activity , now you feel it.  Also a study in 2020 points out that some wheat gluten metabolites have antioxidants that reduce inflammation.

You might want to add vitamin C, Taurine, Selenium as fortifications to your diet and eat more foods with A and E and folate.

• Choline can improve antioxidant capacity
• Folate, a water-soluble B-vitamin, can act as an antioxidant
• Taurine is an antioxidant that protects cells from oxidative and inflammatory stress. 
• Vitamin C is an antioxidant
• Research shows that some vitamin supplements can increase our cancer risk. For example, vitamin A (beta-carotene) has been associated with a reduced risk of certain cancers, but an increase in others – such as lung cancer in smokers (if vitamin A is purified from foodstuffs)." Vitamin supplements and antioxidants  

     

Quote

The fact that gliadin has a high affinity for DPP IV might explain why so many patients with proven celiac disease are asymptomatic. Inhibition of DPP IV by gliadin can result in increased levels of non-metabolized gliadin molecules with opioid activity that can inhibit the typical abdominal pain associated with classical celiac disease... Gluten-derived exorphins mimic endogenous opioid activity   The opioid effects of gluten exorphins: asymptomatic celiac disease

     Immunomodulatory and Antioxidant Properties of Wheat Gluten Protein Hydrolysates in Human Peripheral Blood Mononuclear Cells  [Wheat Gluten Protein Hydrolysates] WGPHs improve the global antioxidant capacity of the cells by direct free radicals scavenging, 

[GardeningForHealth]

On 8/10/2024 at 7:34 PM, knitty kitty said:

It has to do with Mast Cell Activation Syndrome.  

Mast cells become activated when the immune or autoimmune response is triggered, as in Celiac Disease or a cold.  If stimulated for long enough, frequently enough, mast cells develop "itchy trigger fingers" and release infection fighting histamine at the least provocation.  High levels of histamine cause health problems.  

Removing irritating foods by following a low histamine Paleo diet, like the Autoimmune Protocol Diet, helps get the Mast cells to calm down and quit being so sensitive.  A few weeks on the AIP diet improves symptoms by reducing inflammation and allowing for intestinal healing.  The intestine needs time to regrow damaged villi.  

 

I tried taking 10mg loratadine to calm the histamine response, but it had no effect when I consumed foods that I am sensitive to. Still got all the symptoms anyway: extreme fatigue, brain fog, etc. I wonder why it didn't work.

[knitty kitty]

The foods that you are sensitive to may contain high histamine levels.  Your body makes histamine in response to foods you are sensitive to.  

Your body needs time to clear the build up of histamine from both high histamine foods and the high histamine levels your body makes in response to them.  

Avoiding high histamine foods for a while is important while your body heals. 

Antihistamines are not going to be able to clear the histamine if you keep eating high histamine foods. 

Diamine Oxidase (DAO) supplements help reduce histamine in foods.  Our bodies make DAO from Vitamins B12 Cobalamine, B6 Pyridoxine, Vitamin C and Thiamine B1.

DAO supplements are available over the counter. 

You may want to consider DAO supplements and supplementing with Thiamine (Benfotiamine) and the other B Complex vitamins, and Vitamins D and C.

Histamine Intolerance—The More We Know the Less We Know. A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/

Diamine oxidase supplementation improves symptoms in patients with histamine intolerance

https://pubmed.ncbi.nlm.nih.gov/31807350/

Edited September 13, 2024 by knitty kitty
Typo correction

[Liquid lunch]

I’ve had a bit of a breakthrough re other intolerances, largely thanks to knittykitty pointing out that pumpkin seeds contain lectins, I didn’t even know gluten was a lectin! So is avenin in oats, they’re in most foods, chilli is high in lectins.

I’ve cut out all lectins and the difference is incredible, I thought everything must be cross contaminated with gluten or I must be developing all sorts of other intolerances which made shopping similar to playing Russian roulette but now it’s pretty straight forward, I just don’t eat anything containing lectins.

dr gundry is really annoying imo and it’s difficult to endure his videos which he spends half of talking about his qualifications and the other half selling his products but he does have a very accurate list of high lectin vs lectin free food which is invaluable because there’s a lot of mixed info on the net.

I’ve also just discovered I’ve got sibo (small intestine bacterial overgrowth) which explains why I can’t eat apples pears peaches or sugar.

there’s very little left to choose between but as long as I stick to the gundry lectin free approved list minus things that exacerbate sibo I feel loads better.

 

[trents]

Gluten is not actually a lectin but it has some lectin-like properties.

You have actually eliminated all lectins from your diet? I don't think you can do that without going entirely over to a carnivore diet. Lectin is found in almost all plant-based foods. Some have higher levels of lectins than others, of course: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-what-are-dietary-lectins-and-should-you-avoid-eating-them/#:~:text=Lectins are naturally occurring proteins,and wheat and other grains.

[Liquid lunch]

12 minutes ago, trents said:

Gluten is not actually a lectin but it has some lectin-like properties.

You have actually eliminated all lectins from your diet? I don't think you can do that without going entirely over to a carnivore diet. Lectin is found in almost all plant-based foods. Some have higher levels of lectins than others, of course: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-what-are-dietary-lectins-and-should-you-avoid-eating-them/#:~:text=Lectins are naturally occurring proteins,and wheat and other grains.

Yup, and I don’t eat meat. It’s easier than it sounds and there are ways to reduce lectins, soaking, fermenting, pressure cooking. I’ve found I can eat pressure cooked mash potatoes but rice I have to cook it to a mush to make it safe and can’t tolerate fermented soya.

Dr gundry also talks a bit about Neu5Gc in meat and dairy which displaces Neu5Ac in the gut lining joints and blood brain barrier causing inflammation.

I’ve tried all the different milks and fermented is the only safe option, Neu5Gc is a sugar so it makes sense that it would be the first to be consumed in fermented dairy products.

Cheese and kefir are fine according to my guts.

[Wheatwacked]

Get lots of lactobacillus into your gut.  Fermented pickles are a good source.  The quick pickles you see on the store shelves made with vinegar are not a good source.  After a few months try Grass Fed milk. Most people are lactose intolerant without the lactobacillus excreting lactase into your gut.  Our western high carb diet tends to kill them.

Vitamin D status and its modulatory effect on interferon gamma

[Liquid lunch]

9 minutes ago, Wheatwacked said:

Get lots of lactobacillus into your gut.  Fermented pickles are a good source.  The quick pickles you see on the store shelves made with vinegar are not a good source.  After a few months try Grass Fed milk. Most people are lactose intolerant without the lactobacillus excreting lactase into your gut.  Our western high carb diet tends to kill them.

Vitamin D status and its modulatory effect on interferon gamma

I used to like pickled cucumbers but sadly they’re high lectin. There is a correlation between microbiome dysbiosis and auto immune disease, that’s for sure.

I tried grass fed a2 raw milk but still had issues. Lactose free milk was worse so it’s not the lactose.

[trents]

Wheatwacked, what is your source of fermented pickles? Do you make your own. Boy, them is expensive on Amazon! Can you find them in regular grocery stores or is it specialty healthfood store kind of item. I don't know that I've ever seen them on grocery shelves but I never really looked close either.

[Eldene]

On 8/10/2024 at 2:09 PM, Crackerjack said:

I was diagnosed with celiac disease after suffering unexplained and fairly random debilitating abdominal pain  over the past year. I was diagnosed 3 months ago, and started a struct Gluten free diet , and apart from a few initial mishaps ( gravy and a couple of other things) my symptoms have been under control. 
however , I seem to be developing other unexplained food ‘intolerances’ and am having reactions to other foods which Ive never had a priblem with before. The issue Im having  is its so hard to identify what food is causing the problem. One seems to be Lactose, so Im now on Lactose free milk, all good, but I ‘think’ Im now reacting badly to any foods with spices in - after both a curry ( home cooked!) AND a Chilli ( home cooked) Ive woken up with quite severe stomach pains snd diarhoea.

Does this sound really odd? Or is it possible that being Celiac I now am going to have to watch out for other developing food intolerances? Im starting to get paranoid about everything I eat, and its causing me so much stress. 

I emphasize with you! I also developed intollerance for casein in milk, as well as sugar!

[Wheatwacked]

trents,

Naturally Fermented Pickles [The Complete Guide]

I made my own for a while.  The hard part was finding the right container.  Made 16 at a time and were half sours in a few days.  Put in the fridge to stop fermenting and they last.  They are cheaper to make yourself, get Kirby pickles in season at the farmer's market to make your own.  Plus it was fun. They are eaten long before they are too sour for my taste.  I buy refridgerated Batampte from Brooklyn, so these are real Kosher Dills. Bubsies  from Canada are a little spicier; also in the refrigerator foods. Flora olives and a new one Village Mariniated in a bag buried on the olive shelves in Publix.  There are sauerkraut but I have to read the label.

Katz's Deli in NY ships they're homemade. That's the taste I grew up on.  Would go the city to get new glasses and we ate lunch at Katz's while they made them up. Invest in one bottle so you know a good one.Katz's Delicatessen est. 1888

Edited September 27, 2024 by Wheatwacked

[Wheatwacked]

Liquid lunch,

2 hours ago, Liquid lunch said:

pickled cucumbers but sadly they’re high lectin.

Most of the market is in Quick Pickles which gives it the flavor but not the nutritional value. Thats what salt fermentation is for.

Quote

 

Lactobacillus rhamnosus GG: This strain has lectin-like proteins (Llp1 and Llp2) that inhibit the formation of biofilms by pathogens like Salmonella and E. coli. 

Lectins isolated from or expressed by beneficial lactobacilli could be considered promising bio-active ingredients for improved prophylaxis of urogenital and gastrointestinal infections. Lectin-Like Molecules of Lactobacillus rhamnosus GG Inhibit Pathogenic Escherichia coli and Salmonella Biofilm

 

 

[Liquid lunch]

16 minutes ago, Wheatwacked said:

Liquid lunch,

Most of the market is in Quick Pickles which gives it the flavor but not the nutritional value. Thats what salt fermentation is for.

 

Wow I didn’t know Lactobacillus made lectins, these things are everywhere! I know they must have some heath benefits because I see things like soy and sunflower lectins for sale in health food shops, often wondered why people buy them.

It’s pretty extreme to cut them out but they are the only common factor in the massive list of foods that make my guts bleed.

I would recommend anyone with celiac who’s still struggling after going gluten free to try an elimination diet starting with lectin free only and then introducing one thing at a time.

It is limited but there’s still a good variety to choose between on the gundry approved list, you’d  know after a couple of weeks avoiding them if you feel better or not.

[trents]

7 hours ago, Liquid lunch said:

Wow I didn’t know Lactobacillus made lectins, these things are everywhere! I know they must have some heath benefits because I see things like soy and sunflower lectins for sale in health food shops, often wondered why people buy them.

It’s pretty extreme to cut them out but they are the only common factor in the massive list of foods that make my guts bleed.

I would recommend anyone with celiac who’s still struggling after going gluten free to try an elimination diet starting with lectin free only and then introducing one thing at a time.

It is limited but there’s still a good variety to choose between on the gundry approved list, you’d  know after a couple of weeks avoiding them if you feel better or not.

I think you may be confusing lectins with lecithins: https://www.verywellhealth.com/lecithin-benefits-and-nutrition-4771091

[Liquid lunch]

58 minutes ago, trents said:

I think you may be confusing lectins with lecithins: https://www.verywellhealth.com/lecithin-benefits-and-nutrition-4771091

Ah thanks, it did seem odd people buying stuff as a heath supplement that is so damaging.

Not sure I’d risk eating anything extracted from soy or sunflower anyway but it explains the mystery.

[Wheatwacked]

Lecithin is a source of Choline.