Anaphylaxis due to celiac disease?

[Tash18]

Hi everyone,

Since about 1 year I have difficulties eating. Last week I was diagnosed with celiac disease. To me that explains the stomach aches etc. Only I also can't eat many of the foods that I was always able to eat. For example tomatoes, vegetables, meat, fish, potatoes and lots of packed foods like biscuits, cake, chocolate, ice cream, soups etc. The only things I can eat are cucumber, strawberries, mango, eggs, yoghurt, wheat, croissants, cornflakes, rice and cheese. As you can see it's not much what I can eat and some of the items will have to go due to celiac disease. I have had several allergic reactions in the past year and the last one (anaphylaxis) was a few days ago after eating a popsicle. According to the specialist this comes from eating gluten, which I am not sure about? The swelling, rash, tightness of the throat and difficulty swallowing all come from having celiac disease she says. I am also reacting to soap, shampoo and mediciation, and I don't see how this and anaphylaxis can be gluten related? I have had stomach aches for at least 15 years and was diagnosed with IBS and infections in my stomache at first. However the eating problems didn't start until last year after eating cashews and I have lost a lot of weight after since. All the food I am reacting to was fine to eat at first. Is there anyone that recognizes my story? It is very scary not to know how your body is going to react after you eat something. Thank you!!

[cyclinglady]

34 minutes ago, Tash18 said:

Hi everyone,

Since about 1 year I have difficulties eating. Last week I was diagnosed with celiac disease. To me that explains the stomach aches etc. Only I also can't eat many of the foods that I was always able to eat. For example tomatoes, vegetables, meat, fish, potatoes and lots of packed foods like biscuits, cake, chocolate, ice cream, soups etc. The only things I can eat are cucumber, strawberries, mango, eggs, yoghurt, wheat, croissants, cornflakes, rice and cheese. As you can see it's not much what I can eat and some of the items will have to go due to celiac disease. I have had several allergic reactions in the past year and the last one (anaphylaxis) was a few days ago after eating a popsicle. According to the specialist this comes from eating gluten, which I am not sure about? The swelling, rash, tightness of the throat and difficulty swallowing all come from having celiac disease she says. I am also reacting to soap, shampoo and mediciation, and I don't see how this and anaphylaxis can be gluten related? I have had stomach aches for at least 15 years and was diagnosed with IBS and infections in my stomache at first. However the eating problems didn't start until last year after eating cashews and I have lost a lot of weight after since. All the food I am reacting to was fine to eat at first. Is there anyone that recognizes my story? It is very scary not to know how your body is going to react after you eat something. Thank you!!

Welcome!  

Were you diagnosed via biopsies obtained from an endoscopy procedure?  I ask because you might have other concurrent issues like SIBO, h. pylori, Crohn’s,  etc.).  This would have been noted by the pathologist and Gastroenterologist.  That aside, when you have small intestinal damage, it can hurt to digest almost anything.  On top of that most celiacs have food intolances and the most common are milk sugar (lactose), soy and corn.  You should keep a food journal to help you identify your various intolerances which may or may not resolve once you heal.  Is this how you identified your current list of “safe” foods?  

Your doctor is sort of right about the anaphylaxis.  Both celiac disease and anaphylaxis  are under the umbrella of Hypersensitivities.  There are four types.     Google it for further information.  

You might ask your doctor to refer you to a dietitian who is celiac savvy.  I would ask for a referral to an allergist as well.  I hope your doctor prescribed an EPI pen!  

[ch88]

Did the Popsicle contain wheat? 

Celiac disease should not cause anaphylaxis.  I am not a doctor though so this isn't medical advice. Food  or chemical allergies can be dangerous. Celiac disease is a lot different from a food allergy although some symptoms can overlap. During an allergic reaction IGE antibodies are created along with histamine. 

Celiac disease can cause digestive problems in the stomach and intestine as well as a lot of other types of health problems. 

Shampoo and soap (unless they happen to have wheat in them and unless they get into your mouth somehow) should not cause problems for people with celiac disease. 

[Tash18]

Thank you .

Yes I was diagnosed that way. She only advised it was celiac disease. I had no shortage of vitamins etc, which surprised me due to the fact I have barely been eating anything for a year. But I was very glad that this was still ok.

What I am trying to understand is how a person can have celiac disease for years (based on having all the pain symptoms, vomiting etc for years), and then all of a sudden I can't eat anymore. From one day to the other. Can it be that extreme? 

How I made my safe list is by trying food and if I reacted (swollen throat, coughing etc) I eliminated it straight away. I have been basically eating the same food for the past year since there is not much that I have been able to add. And the food that I was able to add contains gluten so there won't be much left and that frightens me because I don't know how to live on dry rice, cucumber, yoghurt, cheese, mango and strawberries for the rest of my life.

I have been given a referral to a dietician and allergist and I am waiting for the appointment confirmation.

I was also given an epipen, however my body reacts to the adrenaline in such an extreme way that I am not able to take it without medical assistance. So I would have to wait for the ambulance to arrive or get to the hospital before I can use it. Which is a scary thought if you are allergic to so many things.

[Tash18]

@Ch88 thank you. 

No it did not contain wheat. Nor does the shampoo and soap. They give a rash and burning feeling.

I do notice that when I eat gluten I get stomach aches, which I understand, and the crazy thing is that I am not having anaphylaxis to food that contains gluten, only to food that does not contain gluten.

[plumbago]

5 hours ago, Tash18 said:

Hi everyone,

Since about 1 year I have difficulties eating. Last week I was diagnosed with celiac disease. To me that explains the stomach aches etc. Only I also can't eat many of the foods that I was always able to eat. For example tomatoes, vegetables, meat, fish, potatoes and lots of packed foods like biscuits, cake, chocolate, ice cream, soups etc. The only things I can eat are cucumber, strawberries, mango, eggs, yoghurt, wheat, croissants, cornflakes, rice and cheese. As you can see it's not much what I can eat and some of the items will have to go due to celiac disease. I have had several allergic reactions in the past year and the last one (anaphylaxis) was a few days ago after eating a popsicle. According to the specialist this comes from eating gluten, which I am not sure about? The swelling, rash, tightness of the throat and difficulty swallowing all come from having celiac disease she says. I am also reacting to soap, shampoo and mediciation, and I don't see how this and anaphylaxis can be gluten related? I have had stomach aches for at least 15 years and was diagnosed with IBS and infections in my stomache at first. However the eating problems didn't start until last year after eating cashews and I have lost a lot of weight after since. All the food I am reacting to was fine to eat at first. Is there anyone that recognizes my story? It is very scary not to know how your body is going to react after you eat something. Thank you!!

While I don't personally recognize your story, from what I understand about allergies, it usually takes a second exposure to an allergen to trigger a reaction such as anaphylaxis.

I’m so sorry to hear of the recent news you are receiving. It’s likely that it’s beyond most of us on these boards to be able to contribute in a super meaningful way, but you never know. The only thing I can say is that, to my understanding, anaphylaxis and celiac disease involve two different sorts of reactions. While some with celiac disease may have immediate reactions, it’s important to note that celiac disease is not technically an “allergy” (so you would probably not have anaphylaxis with celiac disease – again, as far as I know). Anaphylaxis is a type of immediate reaction that occurs in response to your being exposed to an allergen, an allergy in other words. The stereotypical example of this type of reaction is the person who has a peanut allergy and whose throat begins to close. My understanding of celiac disease is that, over time, it is damaging to various parts of your body, particularly your small intestines, and the leaky gut has implications for other systems, such as the joints and nervous system, to name just two. celiac disease occurs as a result of exposure to gluten as you know.

Without more information, I can’t explain why you are having such strong reactions to certain other foods, and why you need medical assistance with your epipen, but hopefully you can get it all sorted out with your visits to the dietician and allergist. Just so you know, there are now powdered foods/meals, which may or may not be able to help. That's just an fyi – not a recommendation one way or the other, but something to bring up with the dietician and/or doctors if it sounds like a possibility. It would of course be critical to examine the exact ingredients in anything you do eat.

Plumbago

 

[cyclinglady]

3 hours ago, ch88 said:

Did the Popsicle contain wheat? 

Celiac disease should not cause anaphylaxis.  I am not a doctor though so this isn't medical advice. Food  or chemical allergies can be dangerous. Celiac disease is a lot different from a food allergy although some symptoms can overlap. During an allergic reaction IGE antibodies are created along with histamine. 

Celiac disease can cause digestive problems in the stomach and intestine as well as a lot of other types of health problems. 

Shampoo and soap (unless they happen to have wheat in them and unless they get into your mouth somehow) should not cause problems for people with celiac disease. 

You are right that celiac disease does not cause anaphylaxis, but both are a part of hypersensitivity which is an over reaction of the immune system.  Here is some information.  It is from Wikipedia, but it is less technical than others which are directed to medical students.

https://en.m.wikipedia.org/wiki/Hypersensitivity

I can not say why some people have allergies (IgE) and others have Autoimmune issues (IgM, IgG, IgA) (or all).  But from personal experience, when you calm one down, the other reactions tend to follow.  

Give the gluten free diet time.  

 

Edited May 1, 2018 by cyclinglady

[Posterboy]

23 hours ago, plumbago said:

While I don't personally recognize your story

Tash18,

I am  like Plumbago,  I did not have these symptom's but I did do some research on your symptom's.

Some Urticaria's do present with anyphlaxis.

quoting from the below link/research on some Uritcarial syndromes presenting as anaphylaxis.

"Chronic urticaria can exist as an independent syndrome that does not commonly have anaphylactic features or signs. However, urticaria can also occur as one of the symptoms of an anaphylactic response."

I think cyclinglady has cold uritcaria if I remember correctly but I have never heard her complain of this symptom.

Here is a research paper about it entitled "Flushing and Urticarial Syndromes Presenting as Anaphylaxis"

https://link.springer.com/chapter/10.1007%2F978-1-60327-951-2_17

I would also so look up Mast cell activation disorder because it is a differential diagnosis.

The celiac patient has a good webpage article on MCAS.

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

and here is a research paper about to prevent anaphylaxis in a MCAS patient entitled "Prevention of anaphylaxis related to mast cell activation syndrome with omalizumab"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3340573/

I hope this is helpful and you find out what is wrong soon.

****this is not medical advice but these are some similar diseases  that can explain your anaphylaxis.

I had a similar reaction to taking Pysllium and I won't ever touch it again despite it being commonly availiable as a laxative so I feeel your concern.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”

Posterboy by the grace of God,

[Tash18]

Hi everyone,

Thank you so much for taking the time to respond! I really appreciate it and I will look into your suggestions further and do some research about it. I have been googling so much trying to find a similar story but I can't seem to find one and it makes me feel like I'm the only person out there going through this. I know this is not true but that is how it feels. It can be very frustrating and scary if you don't know what's wrong with you and being afraid every time you eat.

It has been going on for a year now (not being able to eat) and I hope to get some answers soon. My GP is trying to help me see an allergist sooner since I was told yesterday I cannot take an epipen anymore until I see the allergist and he/she can decide what other steps need to be taken.

[knitty kitty]

23 hours ago, Tash18 said:

Hi everyone,

Thank you so much for taking the time to respond! I really appreciate it and I will look into your suggestions further and do some research about it. I have been googling so much trying to find a similar story but I can't seem to find one and it makes me feel like I'm the only person out there going through this. I know this is not true but that is how it feels. It can be very frustrating and scary if you don't know what's wrong with you and being afraid every time you eat.

It has been going on for a year now (not being able to eat) and I hope to get some answers soon. My GP is trying to help me see an allergist sooner since I was told yesterday I cannot take an epipen anymore until I see the allergist and he/she can decide what other steps need to be taken.

Hi, Tash.  Sorry you're not feeling well.  I empathize with being scared to eat anything.  I remember what that's like.  You're not the only one going through this.  

Posterboy is on the right track with Mast Cell Activation Syndrome and this link is very helpful.  Lots of good reading. 

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

I picture Mast Cell as tanker trucks that drive around spraying for mosquitoes.  These Mast Cell tanker trucks are sitting around idling until they are told to start spraying their toxin (histamine) on intruders, the allergens, and unfortunately, every thing nearby.  Sometimes, these Mast Cell tanker trucks go overboard and spray way too much of their toxin.  And they get all their tanker truck friends to join in and they spray too much toxin and they all make a big mess....

What tells the Mast Cells to start spraying their toxins?  The article says:

"Common triggers for mast cell degranulation in those of us with MCAS include the following:

• insect stings
• pain medications such as NSAIDs and narcotics
• foods and drinks that are high in histamine or are known to trigger histamine release
• extreme temperatures, both hot and cold 
• exercise
• strong scents including perfumes and chemicals 
• friction, pressure, or vibration on the skin
• emotional and physical stress"

So maybe that cold popsicle triggered your Mast Cells.  (Just out of curiosity, what flavor popsicle was it?  ? Ice cream or flavored ice?)  

Sulfites can also trigger Mast Cells.  Here's an article about sulfite intolerance or hypersensitivity by the same author.

http://www.thepatientceliac.com/tag/celiac-disease-and-sulfite-intolerance/

Here's a study about how sulfites trigger mast cells...

https://www.ncbi.nlm.nih.gov/pubmed/16680925

I have a Sulfite Hypersensitivity (type IV).  I have to avoid foods high in sulfites or I get terribly ill and can't breathe.  Sulfite Hypersensitivity CAN cause anaphylaxis.  Here's an article that explains more about sulfite reactions and foods to avoid.  

https://www.verywell.com/sulfite-allergy-82911

Tomatoes, fish, and chocolate are high histamine foods or foods that trigger histamine release.  So are yogurt, cheese, and strawberries!!!

Epipens contain sulfite preservatives.  Here's an article about one women's reaction to sulfite in her medication.  Good sulfite hypersensitivity information.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783707/#!po=42.5926

And one more for curiosity's sake about those cashews that seemed to start the (yarn?) ball rolling... Wonder if they were treated this way...

https://www.ncbi.nlm.nih.gov/pubmed/24926808

Soaps and shampoos often contain sodium laurel sulfate which can trigger that sulfite hypersensitivity reaction...

https://www.livestrong.com/article/538086-sodium-laureth-sulfate-allergy/

Watch out for sodium laurel sulfate in your toothpaste!  I couldn't figure out why I'd have a reaction right before bed when I hadn't eaten anything that could have been a trigger, until I read the toothpaste ingredients.  Avoid heavily scented things.  Many scents and perfumes have sulfur components or sulfite preservatives to make the scent last longer.  And avoid artificially colored foods.  Those chemical food dyes have sulfur components in them, too.  

So, no high histamine foods, no nightshades (potatoes, peppers, eggplants, tomatoes), no processed foods, no legumes,  gluten free and dairy free..... try the Autoimmune Protocol Paleo diet with low histamine foods.  It's hard at first, but it does help and as you heal, you can try adding foods back.  Keep a food journal! 

I read somewhere, sorry I can't find the reference, that mast cells live about eighteen months to two years. So, theoretically this hypothesis said, if you can get your system calm, the old mast cells won't be triggering and "teaching" the new mast cells to react and the old mast cells will die off and the new ones won't be so reactive.  Wouldn't that be lovely! 

Do discuss with your doctor about taking a vitamin and mineral supplement.  Your plasma levels may be fine, but vitamins are used mostly inside cells and are more accurately measured by tissue sample analysis which doctors don't usually do.  The B complex vitamins are water soluble and need to be replenished every day.  Some vitamin requirements may be set too low for optimal health.  Celiac Disease causes malabsorption and getting enough nutrients may be difficult without supplementation at least at first. As you heal, you'll absorb nutrients better and may not need to continue supplementing.  I found molybdenum supplements did help me.

Hope this helps.  

 

 

[Tash18]

On 3-5-2018 at 1:15 PM, knitty kitty said:

Hi, Tash.  Sorry you're not feeling well.  I empathize with being scared to eat anything.  I remember what that's like.  You're not the only one going through this.  

Posterboy is on the right track with Mast Cell Activation Syndrome and this link is very helpful.  Lots of good reading. 

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

I picture Mast Cell as tanker trucks that drive around spraying for mosquitoes.  These Mast Cell tanker trucks are sitting around idling until they are told to start spraying their toxin (histamine) on intruders, the allergens, and unfortunately, every thing nearby.  Sometimes, these Mast Cell tanker trucks go overboard and spray way too much of their toxin.  And they get all their tanker truck friends to join in and they spray too much toxin and they all make a big mess....

What tells the Mast Cells to start spraying their toxins?  The article says:

"Common triggers for mast cell degranulation in those of us with MCAS include the following:

• insect stings
• pain medications such as NSAIDs and narcotics
• foods and drinks that are high in histamine or are known to trigger histamine release
• extreme temperatures, both hot and cold 
• exercise
• strong scents including perfumes and chemicals 
• friction, pressure, or vibration on the skin
• emotional and physical stress"

So maybe that cold popsicle triggered your Mast Cells.  (Just out of curiosity, what flavor popsicle was it?  ? Ice cream or flavored ice?)  

Sulfites can also trigger Mast Cells.  Here's an article about sulfite intolerance or hypersensitivity by the same author.

http://www.thepatientceliac.com/tag/celiac-disease-and-sulfite-intolerance/

Here's a study about how sulfites trigger mast cells...

https://www.ncbi.nlm.nih.gov/pubmed/16680925

I have a Sulfite Hypersensitivity (type IV).  I have to avoid foods high in sulfites or I get terribly ill and can't breathe.  Sulfite Hypersensitivity CAN cause anaphylaxis.  Here's an article that explains more about sulfite reactions and foods to avoid.  

https://www.verywell.com/sulfite-allergy-82911

Tomatoes, fish, and chocolate are high histamine foods or foods that trigger histamine release.  So are yogurt, cheese, and strawberries!!!

Epipens contain sulfite preservatives.  Here's an article about one women's reaction to sulfite in her medication.  Good sulfite hypersensitivity information.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783707/#!po=42.5926

And one more for curiosity's sake about those cashews that seemed to start the (yarn?) ball rolling... Wonder if they were treated this way...

https://www.ncbi.nlm.nih.gov/pubmed/24926808

Soaps and shampoos often contain sodium laurel sulfate which can trigger that sulfite hypersensitivity reaction...

https://www.livestrong.com/article/538086-sodium-laureth-sulfate-allergy/

Watch out for sodium laurel sulfate in your toothpaste!  I couldn't figure out why I'd have a reaction right before bed when I hadn't eaten anything that could have been a trigger, until I read the toothpaste ingredients.  Avoid heavily scented things.  Many scents and perfumes have sulfur components or sulfite preservatives to make the scent last longer.  And avoid artificially colored foods.  Those chemical food dyes have sulfur components in them, too.  

So, no high histamine foods, no nightshades (potatoes, peppers, eggplants, tomatoes), no processed foods, no legumes,  gluten free and dairy free..... try the Autoimmune Protocol Paleo diet with low histamine foods.  It's hard at first, but it does help and as you heal, you can try adding foods back.  Keep a food journal! 

I read somewhere, sorry I can't find the reference, that mast cells live about eighteen months to two years. So, theoretically this hypothesis said, if you can get your system calm, the old mast cells won't be triggering and "teaching" the new mast cells to react and the old mast cells will die off and the new ones won't be so reactive.  Wouldn't that be lovely! 

Do discuss with your doctor about taking a vitamin and mineral supplement.  Your plasma levels may be fine, but vitamins are used mostly inside cells and are more accurately measured by tissue sample analysis which doctors don't usually do.  The B complex vitamins are water soluble and need to be replenished every day.  Some vitamin requirements may be set too low for optimal health.  Celiac Disease causes malabsorption and getting enough nutrients may be difficult without supplementation at least at first. As you heal, you'll absorb nutrients better and may not need to continue supplementing.  I found molybdenum supplements did help me.

Hope this helps.  

 

 

@Posterboy and @knitty kitty, thank you, I recogize a lot of the symptoms from Mast Cell Activation Syndrome. I had never heard of it before, but the more I read about it the more I'm getting the feeling this might be what's wrong with me. I have an appointment with an allergist next week and I will definitely bring this up.

I also recognize not being able to eat chocolate, potatoes, tomatoes and peppers. And funny you mentioned the cheese, strawberries and yoghurt. These are the only 3 out of my current diet that I am having some troubles with. I notice I can only handle very small portions without getting sick or having a tight feeling in my throat. 

I'm sorry that you have to live with this as well @knitty kitty. It's definitely not easy. How did you find out what is safe to eat? Did you keep a journal? Or how can you recognize high histamine foods? I have been googling but it is probably in more foods than I can find. Does it say anything in particular on the food packaging? 

[knitty kitty]

3 hours ago, Tash18 said:

@Posterboy and @knitty kitty, thank you, I recogize a lot of the symptoms from Mast Cell Activation Syndrome. I had never heard of it before, but the more I read about it the more I'm getting the feeling this might be what's wrong with me. I have an appointment with an allergist next week and I will definitely bring this up.

I also recognize not being able to eat chocolate, potatoes, tomatoes and peppers. And funny you mentioned the cheese, strawberries and yoghurt. These are the only 3 out of my current diet that I am having some troubles with. I notice I can only handle very small portions without getting sick or having a tight feeling in my throat. 

I'm sorry that you have to live with this as well @knitty kitty. It's definitely not easy. How did you find out what is safe to eat? Did you keep a journal? Or how can you recognize high histamine foods? I have been googling but it is probably in more foods than I can find. Does it say anything in particular on the food packaging? 

Here's a helpful site, but it's not grain free...

https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

Yes, Tash, I did keep a food journal.  I had lists of low histamine foods that I would use to make menus and shopping lists.  I ate meat (grass fed beef, lamb) and fresh veggies.  (Chicken and fish bother me still.) I did not eat nightshades (potatoes especially contribute to a leaky gut) and I avoided beans and cruciferous veggies (broccoli, cabbage, cauliflower) for a long while.  These tend to make a lot of gas. And no grains, no corn. No dairy, no eggs. I didn't eat anything canned or frozen, dried, pickled or fermented.  

Histamine is not an ingredient added to foods, so it won't be listed on the packaging.  Some foods are high in histamine.  It just naturally occurs.  

I found _The Paleo Approach_by Sarah Ballantyne very helpful.  

Once you get the hang of it, you'll feel so much better.  And later on, after you've healed a while, you can try adding back some foods.  Like chocolate, I went without for months, but I can tolerate it now. Yeah!  Just be really low histamine consistently until your gut heals.  

Your mental attitude is important.  You wouldn't expect to run around in a week on a leg that had been broken.  It takes ten weeks to heal a broken bone.  Think of these diet changes as a cast for your broken innards.  You'll be able to eat other foods once you're healed.  

Hope this helps!  ? 

[1desperateladysaved]

I have gone through allergy trouble.  I went through 30+ years of foggy fatigue which began after a bout of mono when I was 19.   I know that an alternative provider would be likely to tell you that you have leaky gut and that means foods get out of where they should be and the body learns to deal with them as they would an invader.  In past years, I did an IgG allergy test and avoided all of the foods that I had antibodies to. For me, that meant finding all new foods to eat.  I found different meats, veggies, fruits than I had been eating and my fog cleared.  IT was really worth it for me.  When I tried adding the foods back in it really didn't work, so I found that my diet no longer includes the usual American stuff.  I really do not care as long as I feel as good as I do.  There is no need to focus on a few foods, but find some that you haven't eaten.  This is what worked for me.

I wish all the same to you,

Dee

[Tash18]

On 5-5-2018 at 2:47 AM, knitty kitty said:

Here's a helpful site, but it's not grain free...

https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

Yes, Tash, I did keep a food journal.  I had lists of low histamine foods that I would use to make menus and shopping lists.  I ate meat (grass fed beef, lamb) and fresh veggies.  (Chicken and fish bother me still.) I did not eat nightshades (potatoes especially contribute to a leaky gut) and I avoided beans and cruciferous veggies (broccoli, cabbage, cauliflower) for a long while.  These tend to make a lot of gas. And no grains, no corn. No dairy, no eggs. I didn't eat anything canned or frozen, dried, pickled or fermented.  

Histamine is not an ingredient added to foods, so it won't be listed on the packaging.  Some foods are high in histamine.  It just naturally occurs.  

I found _The Paleo Approach_by Sarah Ballantyne very helpful.  

Once you get the hang of it, you'll feel so much better.  And later on, after you've healed a while, you can try adding back some foods.  Like chocolate, I went without for months, but I can tolerate it now. Yeah!  Just be really low histamine consistently until your gut heals.  

Your mental attitude is important.  You wouldn't expect to run around in a week on a leg that had been broken.  It takes ten weeks to heal a broken bone.  Think of these diet changes as a cast for your broken innards.  You'll be able to eat other foods once you're healed.  

Hope this helps!  ? 

Thanks for the website. I will also discuss it with my dietician. 

I know it's probably going to take a while for my body to get better. I have already accepted months ago that I will never eat normal again. So anything that improves is a plus .

On 5-5-2018 at 5:24 AM, 1desperateladysaved said:

I have gone through allergy trouble.  I went through 30+ years of foggy fatigue which began after a bout of mono when I was 19.   I know that an alternative provider would be likely to tell you that you have leaky gut and that means foods get out of where they should be and the body learns to deal with them as they would an invader.  In past years, I did an IgG allergy test and avoided all of the foods that I had antibodies to. For me, that meant finding all new foods to eat.  I found different meats, veggies, fruits than I had been eating and my fog cleared.  IT was really worth it for me.  When I tried adding the foods back in it really didn't work, so I found that my diet no longer includes the usual American stuff.  I really do not care as long as I feel as good as I do.  There is no need to focus on a few foods, but find some that you haven't eaten.  This is what worked for me.

I wish all the same to you,

Dee

Thanks Dee. I'm glad you found a way that works for you .

Right now I'm holding back on trying new foods, simply because I don't know what's safe to eat anymore. Friday I'm seeing an allergist and hopefully that will give me some answers in what foods I can try to eat. In the ER they told me that I can't use my epipen by myself due to the intense reaction my body has to it. I have to wait until the ambulance gets here, which is quite scary. Right now I keep eating the same foods over and over again. And I notice that if I eat to much of something my body starts rejecting that too. Does anybody recognize that as well?

[AGeorges]

On 4/30/2018 at 3:14 PM, Tash18 said:

Hi everyone,

Since about 1 year I have difficulties eating. Last week I was diagnosed with celiac disease. To me that explains the stomach aches etc. Only I also can't eat many of the foods that I was always able to eat. For example tomatoes, vegetables, meat, fish, potatoes and lots of packed foods like biscuits, cake, chocolate, ice cream, soups etc. The only things I can eat are cucumber, strawberries, mango, eggs, yoghurt, wheat, croissants, cornflakes, rice and cheese. As you can see it's not much what I can eat and some of the items will have to go due to celiac disease. I have had several allergic reactions in the past year and the last one (anaphylaxis) was a few days ago after eating a popsicle. According to the specialist this comes from eating gluten, which I am not sure about? The swelling, rash, tightness of the throat and difficulty swallowing all come from having celiac disease she says. I am also reacting to soap, shampoo and mediciation, and I don't see how this and anaphylaxis can be gluten related? I have had stomach aches for at least 15 years and was diagnosed with IBS and infections in my stomache at first. However the eating problems didn't start until last year after eating cashews and I have lost a lot of weight after since. All the food I am reacting to was fine to eat at first. Is there anyone that recognizes my story? It is very scary not to know how your body is going to react after you eat something. Thank you!!

I have similar symptoms!! I have been having idiopathic anaphylaxis for four years now. I was diagnosed with celiac inadvertently a month ago. The doctors were looking for EOE in and endoscopy/colonoscopy and found celiac and my blood work confirmed.

First, let me tell you how much I hear your fear and experiences. And reading through the (best intending) responses to your thread was like hearing echoes of doctors and friends in my life these past years. Everyone has a grand idea of what could be causing the allergic reaction- (I have been tested for allergies for everything under the sun, including dermatological patch testing and I am allergic to NOTHING). These reactions are SO random which is why it is terrifying. I have cut out alcohol, and all caffeine because I have found those are triggering. Some days, like today, my throat is just tight and itchy and I have no idea what could have triggered it. I swear that it is some weird combination of Mercury being in retrograde, me eating three blueberries too many last night and setting my left foot on the floor the first thing in the morning. 

I have chronic spontaneous urticaria that appears as anaphylaxis. I have reacted to tea, coffee, a natural face mask, most shellfish and most recently my first shot of the Covid vaccine. I am actually encouraged that your doctor thinks that celiac may be at the root of your reactions. I currently take two to three Zyrtec a day to help mitigate the anaphylaxis symptoms and usually I can treat reactions with prednisone and Benadryl without having to use my Epipen. 
 

I know people mentioned Mast Cell Activation Disorder and I have been tested for that— both genetically and with lovely 24 hour urine collections- bloodwork and also tryptase levels taken at the end of a reaction in the ER. My current immunologist is a specialist in Mast Cell disorders and previously worked at NIH so if he couldn’t diagnose Mast Cell stuff— I don’t know who could. He also seems to think that my reactions can all stem from the celiac— I am praying that this is my answer and yours too.

I know you posted this two years ago, but I would Love to hear how you are and if eating gluten free was your answer.

 

 

 

 

[Scott Adams]

Welcome to the forum. This thread is a few years old, and it looks like the original posters are not following it. You could try sending them a personal message, and/or posting a new thread on this topic.

[AGeorges]

1 minute ago, Scott Adams said:

Welcome to the forum. This thread is a few years old, and it looks like the original posters are not following it. You could try sending them a personal message, and/or posting a new thread on this topic.

Thank you. I will start a new thread. It was encouraging to find someone with a similar symptom set. I am praying that celiac is the answer to my reactions. It has been a terrifying few years. 

[trents]

1 hour ago, AGeorges said:

I have similar symptoms!! I have been having idiopathic anaphylaxis for four years now. I was diagnosed with celiac inadvertently a month ago. The doctors were looking for EOE in and endoscopy/colonoscopy and found celiac and my blood work confirmed.

First, let me tell you how much I hear your fear and experiences. And reading through the (best intending) responses to your thread was like hearing echoes of doctors and friends in my life these past years. Everyone has a grand idea of what could be causing the allergic reaction- (I have been tested for allergies for everything under the sun, including dermatological patch testing and I am allergic to NOTHING). These reactions are SO random which is why it is terrifying. I have cut out alcohol, and all caffeine because I have found those are triggering. Some days, like today, my throat is just tight and itchy and I have no idea what could have triggered it. I swear that it is some weird combination of Mercury being in retrograde, me eating three blueberries too many last night and setting my left foot on the floor the first thing in the morning. 

I have chronic spontaneous urticaria that appears as anaphylaxis. I have reacted to tea, coffee, a natural face mask, most shellfish and most recently my first shot of the Covid vaccine. I am actually encouraged that your doctor thinks that celiac may be at the root of your reactions. I currently take two to three Zyrtec a day to help mitigate the anaphylaxis symptoms and usually I can treat reactions with prednisone and Benadryl without having to use my Epipen. 
 

I know people mentioned Mast Cell Activation Disorder and I have been tested for that— both genetically and with lovely 24 hour urine collections- bloodwork and also tryptase levels taken at the end of a reaction in the ER. My current immunologist is a specialist in Mast Cell disorders and previously worked at NIH so if he couldn’t diagnose Mast Cell stuff— I don’t know who could. He also seems to think that my reactions can all stem from the celiac— I am praying that this is my answer and yours too.

I know you posted this two years ago, but I would Love to hear how you are and if eating gluten free was your answer.

 

 

 

 

Celiac disease is an autoimmune condition and would engage the immune system through an entirely different pathway than substances that would trigger anaphylaxis. But you could also be allergic to gluten coincidentally.

[Anniehall]

One thought I'm having is did they do the genetic testing to make sure you have the celiacs gene? Are you of European decent because celiacs is uncommon in African American and Asians and most common in people of European decent. I'm wondering if their are other conditions that mimic celiacs affects on the gut. Also it's possible that one or more of the staple foods that you eat you are sensitive to but it doesn't become apparent until you ingest another food that you are sensitive to. This seems to happen to me with certain food combos. For me all plant based proteins are out. And certain other high arginine low lysine foods are out as well. Rose family fruits cause reactions for me that are mild unless paired with another sensitivity.  Strawberries are in the rose family.  Milk is one of the only foods I am extremely good with. I drink milk like a baby but I'm sticking to low fat because too much saturated fat is unhealthy and can lead to other conditions. Looking back at the foods you say you can eat. " cucumber, strawberries, mango, eggs, yoghurt, wheat, croissants, cornflakes, rice and cheese. "  cucumber is a squash. So maybe you can tolerate other foods in the squash family? For me if I tolerate a food in a certain family often times I do well with others in that family.  If you tolerate strawberries maybe rose family fruits could work out for you. There are lots of fruits in this family. I would keep eating the yogurt for pro biotic. I would suggest taking out the gluten and gluten cross reactives which are the wheat, croissants, cornflakes and rice. Then after you go to the allergist and get the skin pick test avoid any foods that you come back as allergic to so you don't go through anymore anaphylaxis. Next start testing foods you might be able to tolerate first one at a time. Waiting for 3 days after to see if your body reacts before testing the next food so you can tell which food is doing what to you. Test plant based protein sources last because these foods are the most suspect of reactors in my opinion and probably cause more severe reactions than lower protein foods. If you can eat eggs I feel like chicken would be a good meat to test out at some point.  I'm sorry to say but mangoes are in the same family as cashews so could be suspect. I can't eat cashews but I can eat mangoes.  They are also in the same plant family as poison ivy. Just because you react to one food in a food family doesn't mean you react to all foods in that family. Although for me I react to several foods in certain families so I'm a little more suspect of other foods in that family. You can also look at sub families in food families and try foods that way. I can't have most foods in the grass family (grains) but theirs one sub family I don't notice a reaction to it includes corn and sugar. Strangely enough corn came back as a mild allergen on my skin prick test though. There are false positives with allergy tests though so who knows. The allergy test also pointed to rice and almonds as allergens both of which I do react to.  Although I've read that corn can be damaging to the celiac gut but without noticeable reaction. An article I read said cut it out whether you react or not if you have celiacs. It's hard for me because I love popcorn but lately I haven't had much of an appetite for anything so everytime I eat it feels like I'm force feeding. So I just eat tiny little bits throughout the day. Sometimes just a glass of milk. A little yogurt, a carrot, one piece of chicken. I feel better this way. I used to be a binge eater but really binge eating can lead to type 2 diabetes and it wipes me out. I feel horrible after and I pass out. Plus over eating any food can lead to the development of allergies to that food. This happened to my mom. She was obsessed with mushrooms and now she can't eat them. Keep a food journal especially on days you have a reaction to try to find patterns.

[Scott Adams]

Corn is safe for celiacs to have, although some celiacs may have a separate corn intolerance, just as they might have intolerances to other foods. 

[Anniehall]

3 hours ago, Scott Adams said:

Corn is safe for celiacs to have, although some celiacs may have a separate corn intolerance, just as they might have intolerances to other foods. 

And corn is a gluten cross reactive. So people can cross react to it. 

[Scott Adams]

As far as I know there is no scientific basis behind the concept of "cross-reactive," but if you have any studies on this idea feel free to share them. I realize that the term gets thrown around a lot, but I think the proper way to interpret what is meant by it is simply that celiacs often have additional similar food intolerances, especially right after diagnosis, and some of these go away after they heal, but some don't.

[Anniehall]

18 hours ago, Scott Adams said:

As far as I know there is no scientific basis behind the concept of "cross-reactive," but if you have any studies on this idea feel free to share them. I realize that the term gets thrown around a lot, but I think the proper way to interpret what is meant by it is simply that celiacs often have additional similar food intolerances, especially right after diagnosis, and some of these go away after they heal, but some don't.

https://paleofoundation.com/19-gluten-cross-reactive-foods/

Download that pdf. That seemed to be the most scientific that I read on cross reactives. I definitely react to foods that are not labeled cross reactives to gluten as well though. I seemed to be able to figure out sensitivites the best by studying food families of suspect foods in my diet and being suspect of other foods in those families. Elimination diet was the best way for me to figure things out really. Allergy tests are not the most reliable because they can have false positives. And just because you dont have an allergy to a food doesn't mean you don't have a sensitivity,  intolerance, or autoimmunity to a food. For me celiacs presents largely as skin issues, dh, eczema, acne, folliculitis, hives. The draw back of the elimination diet is that when you only eat one food in a day and then you fast for 3 days you may have digestive issues because you only ate one food. So for me if I didn't have a skin reaction I figured the food is probably alright even if I was a little constipated or something. Fasting also causes digestive issue during the fast. This is more of an issue during the beginning of an elinmation diet though because for me if I didn't notice a reaction to a food I would include that food in my diet after that and then test the next food. It also seems that high fat foods in the absence of other foods can be constipating so thats something to think about. I was told to start with a two week fast before beginning testing foods for the elimination diet to reset my immune system. Always waiting 3 days after ingestion of a food to see if a reaction occurred and before testing another food because a person can react to a food for 3 days after consumption.  If people do try fasting do know that fasting long term causes fatty liver, gallstones, and can lead to heart failure.  I'm not even sure if the initial two week fast reset is really necessary. A man told me an allergist advised him in the Elimination diet and that's how he discovered he had an issue with dairy. That's how I found out about the elimination diet was from him. Also during a fast, a teaspoon of salt, potassium, magnesium and calcium supplementation are important. Any other vitamins are also okay to ingest. Proteins ( amino acids) are what really break the fast and interfere with the autophagy benefits of fasting.  The salt is the most important of all during the fast because it keeps your blood pressure normal so your energy level stays up so you don't feel dizzy, light headed, or faint, and it clears your bowels out during the fast so you stay regular still. Water is also equally  most important during a fast because it also keeps blood pressure up and clears toxins. Humans can really only go a short time without water before dying. People can go a lot longer on very little or no food. I don't understand why someone would want to put themselves through dry fasting because it sounds like torture to me.

[Anniehall]

1 minute ago, Anniehall said:

https://paleofoundation.com/19-gluten-cross-reactive-foods/

Download that pdf. That seemed to be the most scientific that I read on cross reactives. I definitely react to foods that are not labeled cross reactives to gluten as well though. I seemed to be able to figure out sensitivites the best by studying food families of suspect foods in my diet and being suspect of other foods in those families. Elimination diet was the best way for me to figure things out really. Allergy tests are not the most reliable because they can have false positives. And just because you dont have an allergy to a food doesn't mean you don't have a sensitivity,  intolerance, or autoimmunity to a food. For me celiacs presents largely as skin issues, dh, eczema, acne, folliculitis, hives. The draw back of the elimination diet is that when you only eat one food in a day and then you fast for 3 days you may have digestive issues because you only ate one food. So for me if I didn't have a skin reaction I figured the food is probably alright even if I was a little constipated or something. Fasting also causes digestive issue during the fast. This is more of an issue during the beginning of an elinmation diet though because for me if I didn't notice a reaction to a food I would include that food in my diet after that and then test the next food. It also seems that high fat foods in the absence of other foods can be constipating so thats something to think about. I was told to start with a two week fast before beginning testing foods for the elimination diet to reset my immune system. Always waiting 3 days after ingestion of a food to see if a reaction occurred and before testing another food because a person can react to a food for 3 days after consumption.  If people do try fasting do know that fasting long term causes fatty liver, gallstones, and can lead to heart failure.  I'm not even sure if the initial two week fast reset is really necessary. A man told me an allergist advised him in the Elimination diet and that's how he discovered he had an issue with dairy. That's how I found out about the elimination diet was from him. Also during a fast, a teaspoon of salt, potassium, magnesium and calcium supplementation are important. Any other vitamins are also okay to ingest. Proteins ( amino acids) are what really break the fast and interfere with the autophagy benefits of fasting.  The salt is the most important of all during the fast because it keeps your blood pressure normal so your energy level stays up so you don't feel dizzy, light headed, or faint, and it clears your bowels out during the fast so you stay regular still. Water is also equally  most important during a fast because it also keeps blood pressure up and clears toxins. Humans can really only go a short time without water before dying. People can go a lot longer on very little or no food. I don't understand why someone would want to put themselves through dry fasting because it sounds like torture to me.

Another thing to consider is that any food can have cross reactives, not just gluten. So if you react to a food that is not a gluten cross reactive you could also react to other foods that are cross reactives to that food. Etc. Also just because you react to some foods that are cross reactives doesn't mean you react to all foods that are cross reactives. Since every body is different your body may mistakenly label one cross reactive as the same food and not another because each cross reactive food has a similar protein but they still all have different proteins. 

[Anniehall]

11 minutes ago, Anniehall said:

Another thing to consider is that any food can have cross reactives, not just gluten. So if you react to a food that is not a gluten cross reactive you could also react to other foods that are cross reactives to that food. Etc. Also just because you react to some foods that are cross reactives doesn't mean you react to all foods that are cross reactives. Since every body is different your body may mistakenly label one cross reactive as the same food and not another because each cross reactive food has a similar protein but they still all have different proteins. 

I gotta post a couple more links. This is how I found out that other foods can have cross reactives as well. It makes but I just didn't even think about it before. Every time I've had DH it involved gluten or a gluten cross reactive that I react to and marijuana. So here you go. Maybe this will help someone. I always got a little runny nose or felt kind of congested when I smoke but the DH didn't come on until 32. I was plagued by folliculitis on the same body part as dh appeared starting at 28 but had had recurrent folliculitis since 24. My immune system skin reactions really started acting up more after I got pregnant at 23. I had type 1 herpes on my lip since 12 but it wasn't until I got pregnant that I would have cold sores constantly. Before that it was just lots of bacterial issues below the waist and acne. Uti, bacterial vaginosis, thrush throughout my body. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5936671/

https://www.aascmed.com/blog/allergy-to-marijuana/#:~:text=Cross-reactivity between cannabis and,fruit as orange and grapefruit.