xyzal - what can I take instead?

[mzfixit]

I have had dermatitis herpetiformis since childhood. I’ve also had extensive health issues. My rare disease geneticist sent me to a rare disease allergist for possible MCAS. She put me on the antihistamine diet and a regimen of pills I had to work up to a total of singulair, pepcid and 2 xyzal in the morning, and 2 more xyzal and a peocid at night. All was fine and dandy for about two months. my histamine reactions were about nill and my energy was coming up. I began gaining weight for the first time in my life (15 pounds in 1 month!), but then the dermatitis herperiformis started slowly coming back. At first I thought it was bug bites. My food choices were impeccable. I knew it could not be the food. So I started scrutinizing the meds. I had already been able to stop the pepcid so it had to be the singulair or the xyzal. a quick web search said the singulair was gluten free so I contacted the xyzal manufacturer and got their publicity statement that I have seen posted elsewhere. I responded to them sayi g that under their gluten section they failed to mention 3 different kinds of grains that contain gluten. They declined to respond further. I stopped the xyzal and the rash went away. grrr. I hate they they fain to be gluten free. But here’s the thing, I have tried other antihistamines to replace the xyzal and so far have been unsuccessful for the histamine issue alleviation so what do I take instead? I have tried claritin, chloratabs (chlorpheniramine), and Allegra as replacements with no luck. Any suggestions so I dont have to buy one of everything out there? 

[trents]

So, for clarification, does the xyzal contain either barley or rye?

[mzfixit]

2 hours ago, trents said:

So, for clarification, does the xyzal contain either barley or rye?

I do not know what it contains as they will not respond after their initial comment that they send to everyone. Its very frustrating, but something like that would be my assumption. 

 

2 hours ago, trents said:

So, for clarification, does the xyzal contain either barley or rye?

I have also read other people’s comments on this site about xyzal and they are making the assumption it is gluten free so they are still looking for what os causing their symptoms while using xyzal. 

[knitty kitty]

@mzfixit,

Welcome to the forum!

You had stated that  "I responded to them saying that under their gluten section they failed to mention 3 different kinds of grains that contain gluten."

What were the three different grains they didn't mention?   

Just curious.

With my Histamine Intolerance and Mast Cell Activation Syndrome, I found vitamin supplementation to be extremely helpful without depending on pharmaceuticals.  You have to keep in mind that Celiac Disease causes malabsorption of essential vitamins and minerals.  Without these our bodies cannot function properly, but if given the required nutrients, the body can return to proper functioning and health.  Since you've had symptoms so long, correction of essential vitamins and minerals should be a priority.  However, since vitamins cannot be patented, doctors can earn more money prescribing pharmaceuticals.  Doctors are not given much education about nutrition and the importance of vitamins and minerals.  They are required to have only twenty-four hours of education in nutrition during seven to ten years of medical education.  Doctors are trained to prescribe pharmaceuticals in medical schools funded by pharmaceutical companies.  

Vitamin C breaks down histamine and helps improve Dermatitis Herpetiformis outbreaks, as does Niacin B3 in the form that causes flushing, Nicotinic acid (not related at all to nicotine in tobacco).  The flushing goes away as Nicotinic acid is continued. 

MethylCobalamine B12 helps reduce histamine.  The activated form of Vitamin B6 Pyridoxine, Pyridoxal 5' phosphate (PLP), and MethylFolate B9 are needed to deal with excess histamine, too.  The MTHFR genetic mutation is common in Celiac Disease and is sometimes connected to MCAS.  Methylated forms of vitamins (these active, ready to use forms) are much easier for the body to assimilate and use.

Riboflavin B2 helps relieve the itching of DH.  And Thiamine B1 in the form Benfotiamine is needed as well.  Thiamine actually helps Mast Cells from releasing histamine.  Seems Masts Cells can get really touchy and degranulate histamine at the least provocation.  Thiamine helps them hold their wad. 

These vitamins are also used to make Diamine Oxidase (DAO), an enzyme that breaks down histamine in the digestive tract.  DAO supplements are also available and shown to be beneficial.  

The low histamine version of the Autoimmune Protocol Diet has been really helpful.  See Dr. Sarah Ballantyne's book The Paleo Approach.  She's a Celiac herself and designed the diet, shown to reduce inflammation and promote healing. 

I hope this helps you on your Celiac journey.  Keep us posted on your progress!

References:

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

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

Histamine Intolerance Originates in the Gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

Histamine and ascorbic acid in human blood

https://pubmed.ncbi.nlm.nih.gov/7365537/

Riboflavin Inhibits Histamine-Dependent Itch by Modulating Transient Receptor Potential Vanilloid 1 (TRPV1)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8249943/

Diamine oxidase supplementation improves symptoms in patients with histamine intolerance

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6859183/

Antihistaminic action of (--)-trans-delta 9-tetrahydrocannabinol

https://pubmed.ncbi.nlm.nih.gov/239651/

Mast cell interactions with the nervous system: relationship to mechanisms of disease

https://pubmed.ncbi.nlm.nih.gov/9184654/

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

[Scott Adams]

You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication:

To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area.

• https://dailymed.nlm.nih.gov/dailymed/ 

For Xyzal here are the inactive ingredients for the tablet version, which look gluten-free:

Quote

SILICON DIOXIDE (UNII: ETJ7Z6XBU4) 

HYPROMELLOSES (UNII: 3NXW29V3WO) 

LACTOSE MONOHYDRATE (UNII: EWQ57Q8I5X) 

MAGNESIUM STEARATE (UNII: 70097M6I30) 

MICROCRYSTALLINE CELLULOSE (UNII: OP1R32D61U) 

POLYETHYLENE GLYCOL 400 (UNII: B697894SGQ) 

TITANIUM DIOXIDE (UNII: 15FIX9V2JP)

 

[mzfixit]

On 10/11/2023 at 4:02 PM, knitty kitty said:

@mzfixit,

Welcome to the forum!

You had stated that  "I responded to them saying that under their gluten section they failed to mention 3 different kinds of grains that contain gluten."

What were the three different grains they didn't mention?   

Just curious.

With my Histamine Intolerance and Mast Cell Activation Syndrome, I found vitamin supplementation to be extremely helpful without depending on pharmaceuticals.  You have to keep in mind that Celiac Disease causes malabsorption of essential vitamins and minerals.  Without these our bodies cannot function properly, but if given the required nutrients, the body can return to proper functioning and health.  Since you've had symptoms so long, correction of essential vitamins and minerals should be a priority.  However, since vitamins cannot be patented, doctors can earn more money prescribing pharmaceuticals.  Doctors are not given much education about nutrition and the importance of vitamins and minerals.  They are required to have only twenty-four hours of education in nutrition during seven to ten years of medical education.  Doctors are trained to prescribe pharmaceuticals in medical schools funded by pharmaceutical companies.  

Vitamin C breaks down histamine and helps improve Dermatitis Herpetiformis outbreaks, as does Niacin B3 in the form that causes flushing, Nicotinic acid (not related at all to nicotine in tobacco).  The flushing goes away as Nicotinic acid is continued. 

MethylCobalamine B12 helps reduce histamine.  The activated form of Vitamin B6 Pyridoxine, Pyridoxal 5' phosphate (PLP), and MethylFolate B9 are needed to deal with excess histamine, too.  The MTHFR genetic mutation is common in Celiac Disease and is sometimes connected to MCAS.  Methylated forms of vitamins (these active, ready to use forms) are much easier for the body to assimilate and use.

Riboflavin B2 helps relieve the itching of DH.  And Thiamine B1 in the form Benfotiamine is needed as well.  Thiamine actually helps Mast Cells from releasing histamine.  Seems Masts Cells can get really touchy and degranulate histamine at the least provocation.  Thiamine helps them hold their wad. 

These vitamins are also used to make Diamine Oxidase (DAO), an enzyme that breaks down histamine in the digestive tract.  DAO supplements are also available and shown to be beneficial.  

The low histamine version of the Autoimmune Protocol Diet has been really helpful.  See Dr. Sarah Ballantyne's book The Paleo Approach.  She's a Celiac herself and designed the diet, shown to reduce inflammation and promote healing. 

I hope this helps you on your Celiac journey.  Keep us posted on your progress!

References:

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

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

Histamine Intolerance Originates in the Gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

Histamine and ascorbic acid in human blood

https://pubmed.ncbi.nlm.nih.gov/7365537/

Riboflavin Inhibits Histamine-Dependent Itch by Modulating Transient Receptor Potential Vanilloid 1 (TRPV1)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8249943/

Diamine oxidase supplementation improves symptoms in patients with histamine intolerance

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6859183/

Antihistaminic action of (--)-trans-delta 9-tetrahydrocannabinol

https://pubmed.ncbi.nlm.nih.gov/239651/

Mast cell interactions with the nervous system: relationship to mechanisms of disease

https://pubmed.ncbi.nlm.nih.gov/9184654/

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

I had to go back to my emails to see what the three were, but when they reply they do not include the original message…sneaky cheeks AND they put their response in a link that expires in 14 days so it is no longer their either. 😡 Just off memory I believe one of the grains they did not mention is triticale, and at the time I though glutenous rice contain gluten, but I have since learned differently so that one was one I asked about but the other was in a list of grains containing gluten I found on the internet and was matching to the list of grains they said they did not use. Maybe Kamut? I would have to send another request to look back through this group because someone did post their initial response one time with the list included. Just aggravating that they cant be forthcoming when we suffer so much. 

Thank you for the wealth of info. I will print it out and use it as a reference to get me on track. I appreciate you going to the effort to type that out for me. And yes, I have MTHFR variants. I am compound heterozygous for c677t and a1298c. :-(. 

[mzfixit]

On 10/11/2023 at 5:59 PM, Scott Adams said:

You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication:

To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area.

• https://dailymed.nlm.nih.gov/dailymed/ 

For Xyzal here are the inactive ingredients for the tablet version, which look gluten-free:

 

I believe your answer is in that list. Microcrystalline cellulose. It was traditionally made of wood pulp, but it has been known in pharmaceuticals to be made of wheat straw. now xyzal claims to not use wheat so it could be one of the two glutenous grains they refuse to mention in their disclaimer of products containing gluten not mentioned. I believe they were triticale and kamut if I’m remembering correctly. they play underhanded by not including the original message in their responses to their web site inquiries and then put their responses into a link that expires in 14 days so I do not have those answers. Here is an article a quick web search found about using wheat straw in ibuprofen. I have not read the whole thing, but it does show the practice.

 https://www.sciencedirect.com/science/article/pii/S1319016420300992

I find this highly distressing and disheartening. Thank you for your response. 

[Scott Adams]

The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping.

It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.

 

 

 

[knitty kitty]

8 hours ago, mzfixit said:

I had to go back to my emails to see what the three were, but when they reply they do not include the original message…sneaky cheeks AND they put their response in a link that expires in 14 days so it is no longer their either. 😡 Just off memory I believe one of the grains they did not mention is triticale, and at the time I though glutenous rice contain gluten, but I have since learned differently so that one was one I asked about but the other was in a list of grains containing gluten I found on the internet and was matching to the list of grains they said they did not use. Maybe Kamut? I would have to send another request to look back through this group because someone did post their initial response one time with the list included. Just aggravating that they cant be forthcoming when we suffer so much. 

Thank you for the wealth of info. I will print it out and use it as a reference to get me on track. I appreciate you going to the effort to type that out for me. And yes, I have MTHFR variants. I am compound heterozygous for c677t and a1298c. :-(. 

 😿 MTHFR variants.  Does your doctor have you on Methylfolate? 

Microcrystaline cellulose is made from the stalks of different plants around the world.  It's doubtful they would contain gluten which is concentrated in the seeds of wheat crops.  It's admirable they are trying to find uses for waste products (stalks of food crops).  

It's more likely you're having a reaction to the medication itself.  I have hypersensitivity type four reactions to many drugs especially sulfa based drugs.  

Fixed drug eruption due to levocetirizine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4936078/

There's also more severe, sinister reactions...

Levocetirizine-induced Psychiatric Disorders in a Pediatric Patient: A Case Report and a Pharmacovigilance Database Analysis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5497403/

Drug reactions are no fun.  I've had some scary experiences, too.  What helped me the most was correcting subclinical vitamin deficiencies by taking an "active B Complex" with all the methylated forms of the B vitamins and taking high dose Thiamine (Benfotiamine and TTFD - Tetrahydrofurfuryl disulfide).  

https://www.lifeextension.com/vitamins-supplements/item01945/bioactive-complete-b-complex?gad_source=1&gclid=EAIaIQobChMI6dCC0tCUggMV0n9MCh0DHA-bEAAYASAAEgJ_F_D_BwE

Hope this helps!  

[mzfixit]

On 10/26/2023 at 5:19 PM, knitty kitty said:

 😿 MTHFR variants.  Does your doctor have you on Methylfolate? 

Microcrystaline cellulose is made from the stalks of different plants around the world.  It's doubtful they would contain gluten which is concentrated in the seeds of wheat crops.  It's admirable they are trying to find uses for waste products (stalks of food crops).  

It's more likely you're having a reaction to the medication itself.  I have hypersensitivity type four reactions to many drugs especially sulfa based drugs.  

Fixed drug eruption due to levocetirizine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4936078/

There's also more severe, sinister reactions...

Levocetirizine-induced Psychiatric Disorders in a Pediatric Patient: A Case Report and a Pharmacovigilance Database Analysis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5497403/

Drug reactions are no fun.  I've had some scary experiences, too.  What helped me the most was correcting subclinical vitamin deficiencies by taking an "active B Complex" with all the methylated forms of the B vitamins and taking high dose Thiamine (Benfotiamine and TTFD - Tetrahydrofurfuryl disulfide).  

https://www.lifeextension.com/vitamins-supplements/item01945/bioactive-complete-b-complex?gad_source=1&gclid=EAIaIQobChMI6dCC0tCUggMV0n9MCh0DHA-bEAAYASAAEgJ_F_D_BwE

Hope this helps!  

Oh my gracious!!! Can nothing be straight forward and easy in my life? I just want to cry. I read the article about the FDEs and it also talks about having trouble with Tetracycline. When I was in high school I was put on that for acne. I swelled up so bad the ER doc refused to treat insisting I had taken illicit drugs and that I was lying to my mother. My mom, bless her, threatened him that she would sue him for malpractice if anything happen to me and demanded he go by our statements of fact to treat. She probably saved my life. They kept me three days and a week later we went back to the dermatologist. When she walked in she had to look at her chart again to make sure she had the right patient and room because I was still unrecognizable. Her comment was “Well, I guess you are the one in a million.” 😢 So If I understand what you are saying this means I can’t tolerate the sulfa family of drugs?? I just read up a little on the sulfas and see imitrex on the list which I have only taken 1 of for migraines before starting the antihistamine protocol. Thankfully it did its job and thankfully reducing the histamine load has stopped my migraines so that’s wonderful, but If they return then I better not take that. 😬 When I had the tetracycline reaction it was a couple months into treatment then boom. I was at the theater and my finger started to itch and swell. It was big enough I could hold it up to the light of the screen and see a huge lump so we left and then my lip started and so on till we headed to the ER cause nothing was working. My throat didnt close thankfully. Anaphylaxis from what the article I just read was saying would be immediate so was my experience the Stevens-Johnson syndrome? I am so tired of diagnoses and syndromes how is it possible for one person to have all this stuff. There has to be an underlying answer to it all, doesnt there? Dr House says so. 😂🙄 And I do not have a doctor that I can rely on. The methylfolate I take I buy over the counter. My current primary will argue with me about how to treat my thyroid and wants to cut out my gall bladder, but I fixed that by finding out I have celiac or non-celiac gluten sensitivity and histamine intolerance amongst my laundry list of other stuff. So no. Dont have anyone. I’m actively looking but we live in a small town and we drive to Atlanta for most things. Seems I find a specialist then get another dx, but no one can put all these pieces together. I’ve gotten more help from my facebook groups than from actual doctors. 😭

 

 

[knitty kitty]

@mzfixit,

Yes, I understand how frustrating doctors can be.  They are not well trained in recognizing nutritional deficiencies.  

Thyroid problems occur in subclinical Thiamine deficiency.  The gallbladder starts being problematic in subclinical Thiamine deficiency.  Thiamine also helps Mast cells not to release their histamine, so your histamine levels should go down.  

Benfotiamine is an over-the-counter form of Thiamine that can help correct subclinical thiamine deficiency.

Thiamine needs magnesium to make enzymes together.  Magnesium Glycinate is a form gentle on the digestive system.  

The eight B vitamins work together, so an active B 100 Complex would provide them. 

These are supplements I took to correct my deficiencies.  I hope this helps.

[mzfixit]

good info. thank you.