Chronic Hives

[Fran4]

I was diagnosed with celiac disease via blood work 7 years ago. Since then I have struggled with many other issues including migraines, digestive issues, breathing trouble, and now hives. 3 months ago I broke out into hives all over my body that were incredibly itchy. When I would itch the skin would get red and become raised. Sometimes the blood vessels in the area would even break. It got so bad I had to go to immediate care to seek relief. Since then I have decreased the itching significantly by doctors instructions to take 4 antihistamines a day. When I decreased my antihistamine intake the hives came back. So, now I am considered to have chronic hives and they are starting the process to put me on an injectable medication. 

They can't allergy test me since I still have the hives. They don't know what caused it. They think maybe a reaction after my Covid booster along with a virus spiked my immune system and it won't calm down. I haven't changed my diet or any environmental factors so I don't think its an allergy. Or if it is it is new. 

I have seen that sometimes people with celiac disease experience hives but this hadn't ever happened In the 7 years I have been diagnosed. I eat very well and do not consume gluten. Or other auto-immune disorders have hives as a symptom. I am wondering if I have a second auto-immune disorder. 

I feel as though it may be a part of something else that is bigger. Because I have so many other issues on top of the hives even after not consuming gluten I feel as though there may be another problem but the doctors just keep treating symptoms separately. I do not know what to do. I am young and want to enjoy my youth. So many people say, "you look healthy" but I do not feel healthy. It is hard everyday. I want to find out what is wrong with me. 

So, any advice would be great or if you have had hives what caused it and how did you treat it? Feeling frustrated and hopeless. 

[Jackie Garrett]

8 hours ago, Fran4 said:

I was diagnosed with celiac disease via blood work 7 years ago. Since then I have struggled with many other issues including migraines, digestive issues, breathing trouble, and now hives. 3 months ago I broke out into hives all over my body that were incredibly itchy. When I would itch the skin would get red and become raised. Sometimes the blood vessels in the area would even break. It got so bad I had to go to immediate care to seek relief. Since then I have decreased the itching significantly by doctors instructions to take 4 antihistamines a day. When I decreased my antihistamine intake the hives came back. So, now I am considered to have chronic hives and they are starting the process to put me on an injectable medication. 

They can't allergy test me since I still have the hives. They don't know what caused it. They think maybe a reaction after my Covid booster along with a virus spiked my immune system and it won't calm down. I haven't changed my diet or any environmental factors so I don't think its an allergy. Or if it is it is new. 

I have seen that sometimes people with celiac disease experience hives but this hadn't ever happened In the 7 years I have been diagnosed. I eat very well and do not consume gluten. Or other auto-immune disorders have hives as a symptom. I am wondering if I have a second auto-immune disorder. 

I feel as though it may be a part of something else that is bigger. Because I have so many other issues on top of the hives even after not consuming gluten I feel as though there may be another problem but the doctors just keep treating symptoms separately. I do not know what to do. I am young and want to enjoy my youth. So many people say, "you look healthy" but I do not feel healthy. It is hard everyday. I want to find out what is wrong with me. 

So, any advice would be great or if you have had hives what caused it and how did you treat it? Feeling frustrated and hopeless. 

Hello Fran

I know what it feels like to suffer from Hives and all the other symptoms you are experiencing, I found the cure myself it’s what worked for me it may work for you,        this is what I have done to get myself well, I removed all Dairy/Lactose  which contains histamine from my diet, to reduce the levels in my body, also things which contain man made high histamine drinks ie Tea, Coffee, Alcohol and swapped them for zero caffeine drinks, i drink mainly water hot or cold and herbal teas, I follow mainly a lower histamine diet to be well, so taking out the high acidic things, there is a site called Stuff that works which is worth taking a look at, and it’s discusses a lot of our symptoms on there, and a lot of people seem to improve on a lower histamine diet, which makes sense really when the doctors are always prescribing anti histamines, when we have to much we can get symptoms, Milk/Lactose was my trigger that I never connected to my symptoms it was only when I removed it from my diet that I got well, Lactose is in medication/ supplements,  so be aware of that too as it can raise levels. Histamine intolerance seems to be     a lot of peoples symptoms, there is so much information out there now, and so many people getting symptom free after following a lower histamine diet,I recommend to  always follow a nutritionist advice when changing a diet. I hope this helps you, it helped me get my life back.

[Jackie Garrett]

2 minutes ago, Jackie Garrett said:

Hello Fran

I know what it feels like to suffer from Hives and all the other symptoms you are experiencing, I found the cure myself it’s what worked for me it may work for you,        this is what I have done to get myself well, I removed all Dairy/Lactose  which contains histamine from my diet, to reduce the levels in my body, also things which contain man made high histamine drinks ie Tea, Coffee, Alcohol and swapped them for zero caffeine drinks, i drink mainly water hot or cold and herbal teas, I follow mainly a lower histamine diet to be well, so taking out the high acidic things, there is a site called Stuff that works which is worth taking a look at, and it’s discusses a lot of our symptoms on there, and a lot of people seem to improve on a lower histamine diet, which makes sense really when the doctors are always prescribing anti histamines, when we have to much we can get symptoms, Milk/Lactose was my trigger that I never connected to my symptoms it was only when I removed it from my diet that I got well, Lactose is in medication/ supplements,  so be aware of that too as it can raise levels. Histamine intolerance seems to be     a lot of peoples symptoms, there is so much information out there now, and so many people getting symptom free after following a lower histamine diet,I recommend to  always follow a nutritionist advice when changing a diet. I hope this helps you, it helped me get my life back.

I will add, Lactose is in a lot of Meds/Supplements not all, but if you are to avoid Lactose check first that’s it’s not in the ingredients.

[Fran4]

9 hours ago, Jackie Garrett said:

Hello Fran

I know what it feels like to suffer from Hives and all the other symptoms you are experiencing, I found the cure myself it’s what worked for me it may work for you,        this is what I have done to get myself well, I removed all Dairy/Lactose  which contains histamine from my diet, to reduce the levels in my body, also things which contain man made high histamine drinks ie Tea, Coffee, Alcohol and swapped them for zero caffeine drinks, i drink mainly water hot or cold and herbal teas, I follow mainly a lower histamine diet to be well, so taking out the high acidic things, there is a site called Stuff that works which is worth taking a look at, and it’s discusses a lot of our symptoms on there, and a lot of people seem to improve on a lower histamine diet, which makes sense really when the doctors are always prescribing anti histamines, when we have to much we can get symptoms, Milk/Lactose was my trigger that I never connected to my symptoms it was only when I removed it from my diet that I got well, Lactose is in medication/ supplements,  so be aware of that too as it can raise levels. Histamine intolerance seems to be     a lot of peoples symptoms, there is so much information out there now, and so many people getting symptom free after following a lower histamine diet,I recommend to  always follow a nutritionist advice when changing a diet. I hope this helps you, it helped me get my life back.

I tried going dairy free for a little and it did not help. How long did it take for symptoms to relieve? 

Just now, Fran4 said:

I tried going dairy free for a little and it did not help. How long did it take for symptoms to relieve? 

Also, thank you for the advice I greatly appreciate it. 

[Scott Adams]

I also think that it is very important for you to keep a food diary, to see if there is something that might be triggering it. Look at the top 8 allergens and monitor those in your diet. I will assume that this isn't DH, and that they are hives due to allergies, not celiac disease.

[Fran4]

1 hour ago, Scott Adams said:

I also think that it is very important for you to keep a food diary, to see if there is something that might be triggering it. Look at the top 8 allergens and monitor those in your diet. I will assume that this isn't DH, and that they are hives due to allergies, not celiac disease.

Ya, it doesn't look like DH. How long does it take for a food allergy to cause a reaction? Also, I am on so many antihistamines, the rash is very mild if even there. Would I have to decrease my intake to observe any reactions to food allergens? 

[Scott Adams]

For allergies normally hives develop fairly soon after consumption of the offending item, but I'm not an allergy expert. It might make sense to eliminate one allergen at a time for a week, for example corn, and then add it back. If the hives go away during that week it seems like you might have your culprit, especially if they come back when you eat it again.

[Jackie Garrett]

3 hours ago, Fran4 said:

I tried going dairy free for a little and it did not help. How long did it take for symptoms to relieve? 

Also, thank you for the advice I greatly appreciate it. 

Your welcome Fran,

I had a lot of inflammation in my body and every time I had Dairy the pain was excruciating so I removed it and the pain subsided as the days went on, and so did all my other lifelong symptoms  so I believe it was the acids building up in my body, I call it Histamine pain. Recovery time from symptoms I would say can vary from person to person and depends on the severity of damage done, I had to give up things with Lactic acid and Citric acid in as well, also preservatives, Starter cultures with Lactic acid ingredients in, things  that said natural flavouring in the ingredients as this sometimes contained Lactose so labels are not always clear, so basically my diet is food cooked/ raw in its natural state,  no additives/emulsifiers/thickeners that can be from Lactose, so you see it’s not just Dairy it’s the Lactose/Lactic acid from Dairy that is used in so many different things, so that could be why you didn’t notice a difference because you were still consuming it somewhere in your diet through some starter cultures and some preservatives or med/ supplements. I can not have too many fermented things with out a reaction, sometimes I get a reaction straight away, depending on levels in the body. Labels need to be clearer, you may not have a Dairy Allergy but there is more to just thinking it’s just Milk, butter, Cheese and cream, it’s what the byproduct of Dairy is used in as well. I know now what mainly to avoid, sometimes I get caught out by something, sometimes I have something that I know can give me symptoms but I just fancy eating / drinking it, ( you gotta live) and put up with the odd symptom, but I don’t do that very often, my levels must be a lot lower now because I can have some things that used to affect me and nothing happens, but Dairy/ fermented things  is a definite Histamine Liberator with me, I will get a number of symptoms, so if I stay away I’m fine. But yes a food Diary is a brilliant idea and give things you remove enough time, you may notice a difference quite quickly or it might take a while, time will tell. If there is damage inside the body the body may  take a lot longer to repair, but overall symptoms may disappear fairly soon after avoiding them. I know the Lactose made my body acidic, I try and avoid man made acids where I possibly can and eat more Alkaline foods and drink herbal drinks and good old water !! And try and get some Vitamin D, natural outdoors is best, if not maybe try a Lactose free liquid. Good luck with everything. 

Jackie

[Fran4]

1 hour ago, Jackie Garrett said:

Your welcome Fran,

I had a lot of inflammation in my body and every time I had Dairy the pain was excruciating so I removed it and the pain subsided as the days went on, and so did all my other lifelong symptoms  so I believe it was the acids building up in my body, I call it Histamine pain. Recovery time from symptoms I would say can vary from person to person and depends on the severity of damage done, I had to give up things with Lactic acid and Citric acid in as well, also preservatives, Starter cultures with Lactic acid ingredients in, things  that said natural flavouring in the ingredients as this sometimes contained Lactose so labels are not always clear, so basically my diet is food cooked/ raw in its natural state,  no additives/emulsifiers/thickeners that can be from Lactose, so you see it’s not just Dairy it’s the Lactose/Lactic acid from Dairy that is used in so many different things, so that could be why you didn’t notice a difference because you were still consuming it somewhere in your diet through some starter cultures and some preservatives or med/ supplements. I can not have too many fermented things with out a reaction, sometimes I get a reaction straight away, depending on levels in the body. Labels need to be clearer, you may not have a Dairy Allergy but there is more to just thinking it’s just Milk, butter, Cheese and cream, it’s what the byproduct of Dairy is used in as well. I know now what mainly to avoid, sometimes I get caught out by something, sometimes I have something that I know can give me symptoms but I just fancy eating / drinking it, ( you gotta live) and put up with the odd symptom, but I don’t do that very often, my levels must be a lot lower now because I can have some things that used to affect me and nothing happens, but Dairy/ fermented things  is a definite Histamine Liberator with me, I will get a number of symptoms, so if I stay away I’m fine. But yes a food Diary is a brilliant idea and give things you remove enough time, you may notice a difference quite quickly or it might take a while, time will tell. If there is damage inside the body the body may  take a lot longer to repair, but overall symptoms may disappear fairly soon after avoiding them. I know the Lactose made my body acidic, I try and avoid man made acids where I possibly can and eat more Alkaline foods and drink herbal drinks and good old water !! And try and get some Vitamin D, natural outdoors is best, if not maybe try a Lactose free liquid. Good luck with everything. 

Jackie

Thank you so much! I have been looking more into the histamine tolerance and I think this is what is going on with my body. I have many of the symptoms and am going to try to work to get it under control. I did not know this was a thing and wish it was talked about more. Going to start a food diary to try to track the reactions and symptoms with food. Hoping this is it. Thank you for sharing your experience with me. 

[Jackie Garrett]

6 hours ago, Fran4 said:

Thank you so much! I have been looking more into the histamine tolerance and I think this is what is going on with my body. I have many of the symptoms and am going to try to work to get it under control. I did not know this was a thing and wish it was talked about more. Going to start a food diary to try to track the reactions and symptoms with food. Hoping this is it. Thank you for sharing your experience with me. 

Your welcome.

[AlwaysLearning]

I used to have problems with hives. Turns out it was actually a reaction to mold that I didn't know was in my house, which was causing my immune system to be suped up, which was causing my thyroid to be overactive, which was causing my body to produce too many histamines, which was causing hives.

I have zero allergies but I would get hives on my hands if I washed them. I'd get hives on my legs when I went outside in the cold. It was ridiculous.

I recommend you:

• Get your thyroid levels checked.
• Do a bit of research into histamine intolerance
• Learn about dermatographia 
• Learn what foods are high in histamines so that you can avoid those that will make things worse.

Histamines in your body are like a cup filling up. As long as it is not full, it will not produce symptoms even if the levels are going up and down. But as soon as it starts overflowing, you start to get symptoms.

If your thyroid levels are high, don't let them do surgery to remove your thyroid! Instead, start looking for reasons for why your thyroid might be high, such as the exposure to mold for me (or possibly gluten).

My hives and dermatographia went away once I got my thyroid calmed down with medication. And all of my issues got better once I discovered the mold and dealt with it.

I do know that celiac and thyroid problems are linked, so it makes sense that gluten could cause a similar issue with a person's immune system getting all out of whack and the thyroid becoming overactive. Perhaps someone else has already commented or knows more about this connection specifically. I had already been gluten free for years when I had my issues with hives, so this was not the source of the problem for me.

[Wheatwacked]

Low or deficient vitamin D is a common finding among Celiac Disease and other autoimmune diseases.

"A study by researchers at UNMC shows vitamin D as an add-on therapy could provide some relief for chronic hives, a condition with no cure and few treatment options....Researchers found after just one week, the severity of patients' symptoms decreased by 33 percent for both groups. But at the end of three months, the group taking 4000 IUs of vitamin D3 had a further 40 percent decrease in severity of their hives. The low vitamin D3 treatment group had no further improvement after the first week."    https://www.unmc.edu/news.cfm?match=12374#:~:text=A study by researchers at,the skin and sometimes swelling.

Edited March 24, 2022 by Wheatwacked

[Earlene Xavier]

Keep in mind that about 48% of celiacs react to casein, the protein in milk as if it were gluten as they have a very similar molecular structure, so casein may be the problem rather than lactose!

[Wheatwacked]

24 minutes ago, Earlene Xavier said:

48% of celiacs react to casein, the protein in milk

Is it the casein or is it the palmitic fatty acid (C16:0) used in commercial dairies to increase milk fat and volume which increases the omega 6 content of milk?

Quote

Gains in milk fat yield during C16:0 supplementation were exclusively due to an increase in C16:0 and C16:1 incorporation into milk fat.  https://researchrepository.wvu.edu/cgi/viewcontent.cgi?article=7217&context=etd

"Palmitic acid is a saturated fatty acid whose blood concentration is elevated in obese patients. This causes inflammatory responses"   https://pubmed.ncbi.nlm.nih.gov/31363792/#:~:text=Palmitic acid is a saturated,not only a TLR agonist.

Quote

Palmitic acid (PA) is the most common long-chain saturated FFA present in human plasma and has been reported to be involved in the development of metabolic syndrome by inducing apoptotic cell death of hepatocytes, pancreatic beta cells, and muscle cells (Tavilani et al. 2006; Mancini et al. 2015).    https://www.tandfonline.com/doi/full/10.1080/19396368.2018.1471554

 

 

[Scott Adams]

Probably casein, as the proteins in foods are what has been linked to food intolerance. Of course there may be people where palmitic acid is a factor.

[knitty kitty]

There's a connection between low B12 and autoimmune Hives...

Low B12 levels in chronic idiopathic urticaria

https://pubmed.ncbi.nlm.nih.gov/15736714/

You might want to consider taking a B Complex supplement