Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New And Seem To Be Super Sensitive


sora

Recommended Posts

sora Community Regular

Hi, I am very new to all of this, 4 weeks. I had to quit my job in a bakery when I became very, very ill. Severe asthmatic reaction.

I am waiting for multiple test results but I am not so sure I have Celiac. We will see. Wheat is a huge problem for me for sure so I am learning how to stay away from it. I have been repeatedly cross cont. I may have a problem with Sals as well but I am still testing.

I am having reactions that I could not figure out until I started reading these forum posts. Last night my son made wheat toast and within 30 minutes I noticed a mild reaction starting. Didn't make the connection until this morning. I also cooked spring rolls (wheat wrapper) for him and about an hour later I noticed a reaction again. I went to bed, closed my door and fell asleep. Got up this morning and the reaction started again. I realized I had left the pot of oil on the stove over night.

Just wanted to say hello and bless all of you for being here. This forum has really helped me a lot.

I am also allergic to some chemicals, perfumes, cleaning products etc.

Charlotte


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

Hi, I hope you will be getting a diagnosis soon so that you can get better.

I had chemical sensitivity pre diagnosis and after getting off gluten it went away. Now I have had occasions where others around me are complaining about someone's perfume and I haven't even noticed it!! This is after having to leave the theater, restaurants, meetings, taxis, etc. due to someone's perfume knocking me out. It has been a fabulous difference. I hope that happens with you too.

Lisa Mentor

Hi, I am very new to all of this, 4 weeks. I had to quit my job in a bakery when I became very, very ill. Severe asthmatic reaction.

I am waiting for multiple test results but I am not so sure I have Celiac. We will see. Wheat is a huge problem for me for sure so I am learning how to stay away from it. I have been repeatedly cross cont. I may have a problem with Sals as well but I am still testing.

I am having reactions that I could not figure out until I started reading these forum posts. Last night my son made wheat toast and within 30 minutes I noticed a mild reaction starting. Didn't make the connection until this morning. I also cooked spring rolls (wheat wrapper) for him and about an hour later I noticed a reaction again. I went to bed, closed my door and fell asleep. Got up this morning and the reaction started again. I realized I had left the pot of oil on the stove over night.

Just wanted to say hello and bless all of you for being here. This forum has really helped me a lot.

I am also allergic to some chemicals, perfumes, cleaning products etc.

Charlotte

Hi Charlotte and Welcome! (my granddaughter's name is Charlotte)

So sorry that you have been having problems, but I'm glad that you have found us.

I'm sure that you are anxious for your test results, but you should not go gluten free until you have exhausted all testing regarding Celiac Disease. You doctor might recommend further testing and going gluten free will effect the accuracy.

Often times, a newly diagnosed person with Celiac Disease will react to ALL foods, gluten or not. After a strict gluten free diet, healing can take place. The recovery time frame varies from person to person. Some here have had immediate positive dietary response. For other unfortunately, it has take years.

After people have been strictly gluten free for an extended period of time, and they are still having issues, it's then time to look into a super sensitivity or, more importantly other food intolerance's or sensitivities.

Discuss with your doctor a gluten allergy and/or Celiac Disease or your hypersensitivity to your existing allergies.

Welcome again. :)

Di2011 Enthusiast

I am very new to all of this, 4 weeks. I had to quit my job in a bakery when I became very, very ill. Severe asthmatic reaction.

Hi Charlotte,

Welcome to the forum. Lots of helpful members here to help you along the way.

I also had to quit my bakery job, back in June. I find it ironic that we had to get so close to the poison to recognise it as such!

I still can't handle being around flour. I don't seem to have the same allergy like symptoms with gluten-free flour, thankfully, but it took a while to get my head around handling that looked like wheat flour. I can make my son treats now without getting into a mess :)

T.H. Community Regular

Welcome to the forum. :-)

Hope you get your test results back soon!

catsmeow Contributor

Can you describe your reactions? What are they like? Are they histamine type reactions?

sora Community Regular

Hello again everyone. Thanks for your replies and warm welcome.

It would be wonderful if the chemical thing went away! It's anaphylaxic (sp) and with this wheat thing I am very nervous about going anywhere. I have to bus and that's the worst.

My symptoms are the histamine type. Many, many symptoms but the main ones are itchy mouth, lips, head. Sometimes swelling roof of mouth. Excruciating sinus pain, travel to my ear and down along jaw line to my chin. Grey and very puffy under eyes. Always on the left side, except the itching.

As I told my daughter last night all my symptoms are from my neck up. I have had nausea a few times though.

I am very afraid to eat a slice of wheat bread or anything with a lot of wheat. The pain is almost unbearable. I am still eating non gluten-free oats and cornmeal and I do get very, very minor reactions to them. Stinging sinus, tired.

I have had some major depressive moments and have spoken to a professional.

Thank you Lisa for the info, it cheers me up. Maybe it won't be this bad forever.:)

I wonder if the amount of wheat I still seem to be exposed to will be enough for the test? Does it really matter? The one thing I really know is that wheat is BAD for me.

Charlotte


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



catsmeow Contributor

Hello again everyone. Thanks for your replies and warm welcome.

It would be wonderful if the chemical thing went away! It's anaphylaxic (sp) and with this wheat thing I am very nervous about going anywhere. I have to bus and that's the worst.

My symptoms are the histamine type. Many, many symptoms but the main ones are itchy mouth, lips, head. Sometimes swelling roof of mouth. Excruciating sinus pain, travel to my ear and down along jaw line to my chin. Grey and very puffy under eyes. Always on the left side, except the itching.

As I told my daughter last night all my symptoms are from my neck up. I have had nausea a few times though.

I am very afraid to eat a slice of wheat bread or anything with a lot of wheat. The pain is almost unbearable. I am still eating non gluten-free oats and cornmeal and I do get very, very minor reactions to them. Stinging sinus, tired.

I have had some major depressive moments and have spoken to a professional.

Thank you Lisa for the info, it cheers me up. Maybe it won't be this bad forever.:)

I wonder if the amount of wheat I still seem to be exposed to will be enough for the test? Does it really matter? The one thing I really know is that wheat is BAD for me.

Charlotte

I have a severe wheat allergy and airborne wheat causes me the same histamine reactions as you described. I cannot even be in peoples houses. I swear, I wish the airborne aspect would go away. Being gluten free is easy compared to dealing with reacting everytime I'm within 5 feet of so much as a cracker. I even get hives in my mouth from airborne wheat. I bought an allergy mask frome "breathe easy" website. The mask is kids sized, from what I've read the kids masks are ladies sized. I recieved it in the mail the other day and it fits. I'm going to test it today at someones house. We are going there for Thanksgiving. If it works, I'm going to be so excited and happy. It's suppose to work for airborne food allergies. If it works, I won't have to spend most of my time standing outside using my inhaler, gasping for air and itching the inside of my mouth with stuffed up sinuses and aching neck houlders and back to boot. And I also go into anaphylaxic shock, so I am hoping that I will prevent an epi-pen stick and a trip to the hosp. I'll write again tonight if I am not to sick. If I am well, and the mask worked, I'll be posting. My fingers are crossed. :unsure: I am baking a wild rice stuffed cornish hen to eat while there since as we all know, I won't be eating any of this wheatfest they call Thanksgiving dinner! :lol:

By the way, I am also allergic to chemicals and all fragrances......

sora Community Regular

I have a severe wheat allergy and airborne wheat causes me the same histamine reactions as you described. I cannot even be in peoples houses. I swear, I wish the airborne aspect would go away. Being gluten free is easy compared to dealing with reacting everytime I'm within 5 feet of so much as a cracker. I even get hives in my mouth from airborne wheat. I bought an allergy mask frome "breathe easy" website. The mask is kids sized, from what I've read the kids masks are ladies sized. I recieved it in the mail the other day and it fits. I'm going to test it today at someones house. We are going there for Thanksgiving. If it works, I'm going to be so excited and happy. It's suppose to work for airborne food allergies. If it works, I won't have to spend most of my time standing outside using my inhaler, gasping for air and itching the inside of my mouth with stuffed up sinuses and aching neck houlders and back to boot. And I also go into anaphylaxic shock, so I am hoping that I will prevent an epi-pen stick and a trip to the hosp. I'll write again tonight if I am not to sick. If I am well, and the mask worked, I'll be posting. My fingers are crossed. :unsure: I am baking a wild rice stuffed cornish hen to eat while there since as we all know, I won't be eating any of this wheatfest they call Thanksgiving dinner! :lol:

By the way, I am also allergic to chemicals and all fragrances......

Good luck tonight and let me know if that mask works.

Charlotte

catsmeow Contributor

I made it through the wheaty jungle unscathed thanks to my breath easy mask. I'm here to report that it worked! It worked on the food (wheat), but not on perfume. A lady sprayed perfume on herself right before she left,and I felt slightly dizzy despite the mask. It didn't work "all" the way on the freshley sprayed perfume, but the mask worked well enough that I did not have to go outside. The mask was comfortable to wear too. It does slip a little when actively engaged in conversation, but I did not mind bacause I was in the house filled with freshley baked and baking hot wheaty rolls, pies, stuffing, and cake. I also stood there watching my host making gravy with wheat flour, and she let the flour fly. This would usually make me very very very very very ill, I would have had to leave, but I was unscathed and well, not even a hint of dizzy. By the way, when I first walked in, I got dizzy, then put the mask on. The start of the reaction (being dizzy) stopped after 5 minutes in the mask. I am happy, yes it looked like a diaper on my face, but it worked! The little kids thought I was a doctor.

T.H. Community Regular

Something that my allergist told me, and that I've managed to experience (unfortunately), is that if you have an allergic reaction, your body is basically 'primed' to have another one until your IgE levels drop down to normal, which can take a week or so. It can also set you up to have a more severe reaction when you might normally have a lesser one.

Wonder if things like eating wheat contaminated oats or cornmeal might make your sensitivity even worse, make you more prone to have a more severe reaction, you know? Don't know for sure, but it might.

I wonder if the amount of wheat I still seem to be exposed to will be enough for the test? Does it really matter?

It might, it might not. I had a blood test for allergies that tested positive for coffee (which i definitely react to), and my only exposure in the 6 months previous were 2 sips and inhaled coffee. They never did the prick test on me, in part because I was starting to have worse reactions to it when inhaled. I just thought, this allergen=bad, so there's no way I'm touching it. What more do I need to know?

But now? I'm going to go and get further allergy testing done with coffee, and for the same reason I'd suggest you might want to consider it. With your level of sensitivity, it's likely really important to find out what types of contact will make you react. Ingested, inhaled, contact with mucus membranes, contact with skin?

It might be possible that you have a worse reaction to contact with your mucus membranes. Or mainly inhaled. Or you could have low level reactions to skin contact that could be keeping your body constantly in a state of elevated IgE so you're on the verge of a more serious reaction constantly, you know? If it's mucus membranes vs. the digestive tract only, that would be good to know because your eyes could be an issue that the mask wouldn't be able to protect.

With how sensitive your body sounds like, if there IS a low level contact issue with the skin, you'd want to know if wheat in building materials like wood putty or plywood is a problem. Or drywall dust, or wheat in soaps/lotions/shampoos.

If you have a skin contact allergy to it, you may be getting a constant bombardment of small contacts with your allergen that could be causing you a lot of trouble. If you did look into it further, I'd search for an allergist who is knowledgeable about food allergies. Local allergy groups will often know of the allergists in town who seem to know what they're doing in that regard.

sora Community Regular

Something that my allergist told me, and that I've managed to experience (unfortunately), is that if you have an allergic reaction, your body is basically 'primed' to have another one until your IgE levels drop down to normal, which can take a week or so. It can also set you up to have a more severe reaction when you might normally have a lesser one.

Wonder if things like eating wheat contaminated oats or cornmeal might make your sensitivity even worse, make you more prone to have a more severe reaction, you know? Don't know for sure, but it might.

It might, it might not. I had a blood test for allergies that tested positive for coffee (which i definitely react to), and my only exposure in the 6 months previous were 2 sips and inhaled coffee. They never did the prick test on me, in part because I was starting to have worse reactions to it when inhaled. I just thought, this allergen=bad, so there's no way I'm touching it. What more do I need to know?

But now? I'm going to go and get further allergy testing done with coffee, and for the same reason I'd suggest you might want to consider it. With your level of sensitivity, it's likely really important to find out what types of contact will make you react. Ingested, inhaled, contact with mucus membranes, contact with skin?

It might be possible that you have a worse reaction to contact with your mucus membranes. Or mainly inhaled. Or you could have low level reactions to skin contact that could be keeping your body constantly in a state of elevated IgE so you're on the verge of a more serious reaction constantly, you know? If it's mucus membranes vs. the digestive tract only, that would be good to know because your eyes could be an issue that the mask wouldn't be able to protect.

With how sensitive your body sounds like, if there IS a low level contact issue with the skin, you'd want to know if wheat in building materials like wood putty or plywood is a problem. Or drywall dust, or wheat in soaps/lotions/shampoos.

If you have a skin contact allergy to it, you may be getting a constant bombardment of small contacts with your allergen that could be causing you a lot of trouble. If you did look into it further, I'd search for an allergist who is knowledgeable about food allergies. Local allergy groups will often know of the allergists in town who seem to know what they're doing in that regard.

I am brain foggy this morning. Just started to reply here and stood up and walked away and I don't know why. ACK. So hope this is not too jumbled.

Initially I didn't recognize symptons, would just wake in the middle of the night in horrible face pain. As I started to figure this out I started watching for the smallest sign of anything different. Now I can feel it from early on and can usually tell if it will be minor or major and often within 30 minutes of exposure. Sooo, I noticed one of the first signs is itchy eyes or skin. It would seem to be mucus membrane. I was cooking a pot of wheat noodles for my son early on and got itchy forearms and hands just from stirring the pot.

Woke up this morning and within 30 minutes started to get a reaction. I think it's the computer mouse, my son ate a sandwich while on the computer.

I will call my doc and make another appt. I am being sent to an allergist but that was for the chemical allergy. I will talk to my doc more about this. I am concerned about becoming more sensitive, if that is even possible. It is bad enough now.

Tests for me right now are for kidney, thyroid, B12 etc and Tissue Transglutaminase and IgA.

This is a real emotional battle. Out of work, apartment living, can't afford to move or buy these gluten-free products. Can't afford to replace pots and pans etc. Always the anxiety of it all. I am trying to stay positive. It helps a lot using this forum with such knowledgeable people. Thank you for being here.

The upside is that I am a cook. So I am trying to see the new challenge in learning how to bake all over again. :)

Thank goodness my birthday and Christmas are coming. Guess whats going on my list?

sora Community Regular

I made it through the wheaty jungle unscathed thanks to my breath easy mask. I'm here to report that it worked! It worked on the food (wheat), but not on perfume. A lady sprayed perfume on herself right before she left,and I felt slightly dizzy despite the mask. It didn't work "all" the way on the freshley sprayed perfume, but the mask worked well enough that I did not have to go outside. The mask was comfortable to wear too. It does slip a little when actively engaged in conversation, but I did not mind bacause I was in the house filled with freshley baked and baking hot wheaty rolls, pies, stuffing, and cake. I also stood there watching my host making gravy with wheat flour, and she let the flour fly. This would usually make me very very very very very ill, I would have had to leave, but I was unscathed and well, not even a hint of dizzy. By the way, when I first walked in, I got dizzy, then put the mask on. The start of the reaction (being dizzy) stopped after 5 minutes in the mask. I am happy, yes it looked like a diaper on my face, but it worked! The little kids thought I was a doctor.

I am so glad that it worked for you. I guess it made all the difference between having a good day or a bad day.

A friend recently told me a story of a co worker she had years ago that wore a gas mask type contraption at work. She said that this woman was allergic to just about everything.

Charlotte

sora Community Regular

Is there a list somewhere of wheat containing woods etc?

Charlotte

kareng Grand Master

Is there a list somewhere of wheat containing woods etc?

Charlotte

Wheat in wood?

sora Community Regular

Wheat in wood?

Sorry, as Shauna said plywood etc. wood putty.

Charlotte

sora Community Regular

Wheat in wood?

Sorry again. It's the brain fog.

I mean a list of things for me to look out for which might contain wheat.

other than food.

psawyer Proficient

Here is a complete list of the woods that are sources of gluten:

Gluten, as defined in terms of celiac disease, is found in three or four specific grains: wheat, rye, barley, and possibly oats. Other plants are all gluten-free by their nature.

catsmeow Contributor

Something that my allergist told me, and that I've managed to experience (unfortunately), is that if you have an allergic reaction, your body is basically 'primed' to have another one until your IgE levels drop down to normal, which can take a week or so. It can also set you up to have a more severe reaction when you might normally have a lesser one.

Wonder if things like eating wheat contaminated oats or cornmeal might make your sensitivity even worse, make you more prone to have a more severe reaction, you know? Don't know for sure, but it might.

It might, it might not. I had a blood test for allergies that tested positive for coffee (which i definitely react to), and my only exposure in the 6 months previous were 2 sips and inhaled coffee. They never did the prick test on me, in part because I was starting to have worse reactions to it when inhaled. I just thought, this allergen=bad, so there's no way I'm touching it. What more do I need to know?

But now? I'm going to go and get further allergy testing done with coffee, and for the same reason I'd suggest you might want to consider it. With your level of sensitivity, it's likely really important to find out what types of contact will make you react. Ingested, inhaled, contact with mucus membranes, contact with skin?

It might be possible that you have a worse reaction to contact with your mucus membranes. Or mainly inhaled. Or you could have low level reactions to skin contact that could be keeping your body constantly in a state of elevated IgE so you're on the verge of a more serious reaction constantly, you know? If it's mucus membranes vs. the digestive tract only, that would be good to know because your eyes could be an issue that the mask wouldn't be able to protect.

With how sensitive your body sounds like, if there IS a low level contact issue with the skin, you'd want to know if wheat in building materials like wood putty or plywood is a problem. Or drywall dust, or wheat in soaps/lotions/shampoos.

If you have a skin contact allergy to it, you may be getting a constant bombardment of small contacts with your allergen that could be causing you a lot of trouble. If you did look into it further, I'd search for an allergist who is knowledgeable about food allergies. Local allergy groups will often know of the allergists in town who seem to know what they're doing in that regard.

Wow Shauna, thanks for writing this! I've never heard an explanation for why my reactions are different on any given day. I always just say "My mileage may vary" Meaning somedays, a cracker in the room nearly sends me to the hosp, and other times it doesn't. It makes perfect sense that my body is primed for another worse reaction because of elevated IgE levels. Thank you very much for writing this. It makes sense to me, now I understand why my mileage varies. :)

Hey sora, I wanted to tell you a few things that I do when I am reacting that help get reactions under control, and also prevent them from coming on so fast and furiously. I carry claritin in my purse (and benadryl), but, I chew up a claratin and let it sit under my tongue, so as to get it sublingually, I drink coffee, because it also helps with reactions, coffee has anti-allergic properties because of its ability to reduce the release of histamine from mast cells. So between a claratin and coffee, and getting out of the wheaty environment, I can reduce and recovery from a reaction faster. If that doesn't work, out comes my inhaler, flonaze, benadryl,and then the last resort, the epi-pen.

dilettantesteph Collaborator

Wheat flour can be used in the production of plywood.

Open Original Shared Link

Second page, second line of writing.

catsmeow Contributor

Wheat flour can be used in the production of plywood.

Open Original Shared Link

Second page, second line of writing.

WOW....now I know why I react in Home Depot so bad. That place kills me, especially when I am in the lumber area. My husband always tells me not to come with him when he goes to lumber. He has noticed my reactions get worse over there. Thanks for this info!!!!! It makes PERFECT sense!

sora Community Regular

Wow Shauna, thanks for writing this! I've never heard an explanation for why my reactions are different on any given day. I always just say "My mileage may vary" Meaning somedays, a cracker in the room nearly sends me to the hosp, and other times it doesn't. It makes perfect sense that my body is primed for another worse reaction because of elevated IgE levels. Thank you very much for writing this. It makes sense to me, now I understand why my mileage varies. :)

Hey sora, I wanted to tell you a few things that I do when I am reacting that help get reactions under control, and also prevent them from coming on so fast and furiously. I carry claritin in my purse (and benadryl), but, I chew up a claratin and let it sit under my tongue, so as to get it sublingually, I drink coffee, because it also helps with reactions, coffee has anti-allergic properties because of its ability to reduce the release of histamine from mast cells. So between a claratin and coffee, and getting out of the wheaty environment, I can reduce and recovery from a reaction faster. If that doesn't work, out comes my inhaler, flonaze, benadryl,and then the last resort, the epi-pen.

I always carry Benadryl for the chemical reactions and take it now for these wheat reactions. It does seem to ease it but puts me right to sleep. I have also heard of the coffee thing but haven't tried it.

kenlove Rising Star

Wheat starch was used to make particle boards and pressed lumber. The key word being was. I dont know if it still is.

They never affected me unless I had to cut them. If its simply used someplace its not a problem

Wheat in wood?

sora Community Regular

Wheat flour can be used in the production of plywood.

Open Original Shared Link

Second page, second line of writing.

Thank you. My computer can't handle PDF so I will look at it this aft at my daughters.

Lisa Mentor

Perhaps a new thread regarding exceptional allergies and chemical sensitivities would be in order. :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    2. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    3. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.