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

Wheat Allergy

MzMillz

By MzMillz
in Related Issues & Disorders

 Share

Recommended Posts

MzMillz Newbie
MzMillz
Posted

I am in desperate need of some help. I am in the UK. I’m currently trying to get an allergist. I need some clarification. Facebook groups are not getting me anywhere. I think after speaking to a woman who has a weed allergy for 35 years I have been minimally poisoning myself.  I always assumed that gluten-free meant it was safe for me to eat only to find out that that’s not the case.. I did not know that gluten-free products contain small amounts of gluten still and I found out the hard way by eating some gluten-free mozzarella sticks. I’m told to stay away from dextrose, spirit vinegar, maltodextrin , citric acid and if anything just states starch but not what type. I’m really struggling mentally and emotionally here. I just really need some clarification and some help. 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, @MzMillz!

Some clarification from you first, please. Your post's subject line says "Wheat Allergy". Yet, your actual post speaks of avoiding gluten as if you may have celiac disease. Celiac disease is not an allergy. It is an autoimmune disorder. Have you been officially diagnosed with celiac disease?

cristiana Veteran
cristiana
Posted

Hi @MzMillz and welcome to the forum.  I am a UK coeliac.   I hope I might be able to help as a UK coeliac who is conversant with the NHS system, and have a friend who whilst isn't a coeliac had to try to work out what was causing an allergy through the private health route in the UK.

But first, I agree with @trents  that it would be good to know if you have been diagnosed with coeliac disease?

MzMillz Newbie
MzMillz
Posted
  • Author

No I don’t have coeliac disease , I have a wheat allergy with epi pens. I’m just stating how everything seems so confusing. I didn’t know that some gluten free product still contained gluten. When I went to the allergist, she said I was allergic to 

Rye ,barley , wheat, spelt , semolina & rusk. 
 

I feel like I’m learning everything all over again. And I just feel a bit lost and overwhelmed. I don’t know what I’m being told is that or not? I’m trying to get an allergist here in the UK.

 

Hi Christina , sorry I did a reply early to Trent and it didn’t go through , it explains it all. IM originally from Canada so things are a bit different here . Just really needing some gudiance 

cristiana Veteran
cristiana
Posted

Thanks for the reply, I can see how confusing this all must be.

A wheat allergy is certainly a whole different ball game to coeliac disease.  

Did this allergy suddenly present itself?  Or is it something that has been building over the years?   It might be helpful to know if you have ever been tested for coeliac disease, too.

Sorry for three more questions, but it would b helpful to know a little more about how this has come about.

MzMillz Newbie
MzMillz
Posted
  • Author
6 minutes ago, cristiana said:

Thanks for the reply, I can see how confusing this all must be.

A wheat allergy is certainly a whole different ball game to coeliac disease.  

Did this allergy suddenly present itself?  Or is it something that has been building over the years?   It might be helpful to know if you have ever been tested for coeliac disease, too.

Sorry for three more questions, but it would b helpful to know a little more about how this has come about.

So about 9 years ago it started I would eat something containing wheat my tongue would start to tingle and I would black out , come to with sweat pouring down my body. I chalked it up to an allergy , anytime I would have gluten this would happen, or even when I would eat something that would say may contain. I moved to the UK 3 years ago and I noticed I now couldn’t bake or cook with gluten ( I would for my kids ) my throat started to get tight when I was baking cupcakes with regular flour , so I removed it from my house . These last few months I’ve had a few reactions the worst one was some mozzarella sticks from Sainsbury’s I was violently sick , it said gluten free I assumed it was safe as I didn’t know I needed to be also eating things that say wheat free. I had some Gluten free granola days before this happened my tongue started to tingly , I used some Hawaiian tropic after sun on my face same thing happened , I was in panic mode because I thought I was going to go down. I went to this woman here Ruth Tophill she does allergy testing with this metal thing sorry I don’t know exactly what it’s called but it tests all your levels of everything and can tell you your allergies. I’ve not be tested by a GP for any of this it’s pretty much been a self diagnosis.  

cristiana Veteran
cristiana
Posted
(edited)

My friend who has an allergy has experienced huge problems trying to find out what she was allergic too, and then finally being able to find someone qualified and affordable who could test her.  She felt yeast was a problem, he confirmed it.  But as has been your experience, she's really had to go down this route without the support of a GP and it took a couple of years to sort out.    Her GP has listened to her finally, though, as she too now carries an epipen.

My feeling is that if you have an allergy to gluten, a lot of certified gluten-free substitutes (bread, pasta, cake etc) will be unsuitable for you as they can contain up to 20ppm of gluten.

I hope others will be able to chime in for now, because, forgive me,  I have to finish here tonight, I've not had supper yet and need to catch up with the family, but will come back tomorrow to see if I can help further then.

 

 

 

Edited by cristiana
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


MzMillz Newbie
MzMillz
Posted
  • Author
10 minutes ago, cristiana said:

My friend who has an allergy has experienced huge problems trying to find out what she was allergic too, and then finally being able to find someone qualified and affordable who could test her.  She felt yeast was a problem, he confirmed it.  But as has been your experience, she's really had to go down this route without the support of a GP and it took a couple of years to sort out.    Her GP has listened to her finally, though, as she too now carries an epipen.

My feeling is that if you have an allergy to gluten, a lot of certified gluten-free substitutes (bread, pasta, cake etc) will be unsuitable for you as they can contain up to 20ppm of gluten.

I hope others will be able to chime in for now, because, forgive me,  I have to finish here tonight, I've not had supper yet and need to catch up with the family, but will come back tomorrow to see if I can help further then.

 

 

 

Thank you for even responding, I’m hoping to really get to the bottom of it . I’ve just been buying things now that say gluten free wheat free together. I haven’t tried to eat it yet as my anxiety is so high with it still. I’ve been living off of fresh foods but I leave tomorrow for my holiday so not sure what I’m going to do. But I’m already down 6 pounds so far because of the lack of things I’m eating. Just wanna get back from this holiday and start harassing my GP. I’ve posted in my local towns gluten free group asking if anyone has seen an allergist it’s only been approve with in the hour and I posted days ago lol so we’ll see. Enjoy your dinner and family time

cristiana Veteran
cristiana
Posted
(edited)
35 minutes ago, MzMillz said:

Thank you for even responding, I’m hoping to really get to the bottom of it . I’ve just been buying things now that say gluten free wheat free together. I haven’t tried to eat it yet as my anxiety is so high with it still. I’ve been living off of fresh foods but I leave tomorrow for my holiday so not sure what I’m going to do. But I’m already down 6 pounds so far because of the lack of things I’m eating. Just wanna get back from this holiday and start harassing my GP. I’ve posted in my local towns gluten free group asking if anyone has seen an allergist it’s only been approve with in the hour and I posted days ago lol so we’ll see. Enjoy your dinner and family time

Back again - hubby has gone upstairs to do something so I thought I'd just check your post.  It is tough what you are going through.

All I can say is try when on holiday keep eating whole foods that are naturally gluten free; make sure to wash any vegetables or fruit that might have been stored near gluten (or make sure catering staff are aware).  Make sure that anything you do eat is not prepared on a board which might have been used to prepare gluten.  I was once served a salad that had been prepared on a bread board - I could even see the crumbs! 

I hope you have a good holiday. 

Cristiana

Edited by cristiana
trents Grand Master
trents
Posted

cristiana, correction to something you posted earlier in this thread. Certified Gluten Free products contain less than 10ppm of gluten. Gluten Free products contain less than 20ppm of gluten, at least that is the standard here in the USA. But the CFGF is an international standard.

cristiana Veteran
cristiana
Posted
10 hours ago, trents said:

cristiana, correction to something you posted earlier in this thread. Certified Gluten Free products contain less than 10ppm of gluten. Gluten Free products contain less than 20ppm of gluten, at least that is the standard here in the USA. But the CFGF is an international standard.

Hi @trents.  I think I should have also worded it 'less than'.   I didn't know this difference existed, thanks for the clarification.

 

cristiana Veteran
cristiana
Posted
(edited)

@MzMillz   Hello again.   

As it sounds that you are dealing with an allergy as opposed to Coeliac Disease (although there may be a chance that you have both) I think you might be best to contact the Allergy UK helpline for further advice and support and to find out what sort of help you can get in this country.  I have not used their services but they are recommended on the NHS website.

https://www.allergyuk.org/our-services/helpline/   

https://www.nhs.uk/conditions/food-allergy/

As I said in an earlier post, my friend found it quite a process getting tested and in the end decided to get tested privately.  But she is getting support from the NHS now.  I am not sure if it is the same in Canada, but in this country seeing a specialist privately can sometimes speed things up a bit.  They might be able to refer you on elsewhere for further support.

Do come back to us if we can help further.

Cristiana

Edited by cristiana
MzMillz Newbie
MzMillz
Posted
  • Author
8 hours ago, cristiana said:

@MzMillz   Hello again.   

As it sounds that you are dealing with an allergy as opposed to Coeliac Disease (although there may be a chance that you have both) I think you might be best to contact the Allergy UK helpline for further advice and support and to find out what sort of help you can get in this country.  I have not used their services but they are recommended on the NHS website.

https://www.allergyuk.org/our-services/helpline/   

https://www.nhs.uk/conditions/food-allergy/

As I said in an earlier post, my friend found it quite a process getting tested and in the end decided to get tested privately.  But she is getting support from the NHS now.  I am not sure if it is the same in Canada, but in this country seeing a specialist privately can sometimes speed things up a bit.  They might be able to refer you on elsewhere for further support.

Do come back to us if we can help further.

Cristiana

Hi cristiana 

 

thank you so much ! When I get back to the UK I will definitely look into all of this. I’m fully prepared to go private at this point too . Thank you for all your help and I will definitely report back when I have some answers! 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • 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. Hmart
      - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is this celiac?

      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 1...
    2. knitty kitty
      - knitty kitty replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

      @Trish G, I like dates, they have lots if fiber as well. But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small...
    3. knitty kitty
      - knitty kitty replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      ttg iga high (646 mg/dl) other results are normal

      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines. Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured...
    4. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement. Thanks again
    5. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      If you were wondering why milk protein bothers you with Celiac Disease. Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,345
    • Most Online (within 30 mins)
      7,748
    rolland mcclay
    Newest Member
    rolland mcclay
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Hmart
      Is this celiac?

      By Hmart · Posted

      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      Fiber Supplement

      By knitty kitty · Posted

      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      ttg iga high (646 mg/dl) other results are normal

      By knitty kitty · Posted

      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
×
×
  • 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.