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

Gluten Allergy


Ginger Sturm

Recommended Posts

Ginger Sturm Newbie

I just recently found out that I'm allergic to gluten and wheat. I'm just wondering what other testing I need to have done? I got the blood test done for celiac and it came back negative. I heard that the only way to really tell is if you get a biopsy of the small intestines. My homeopathic doctor doesnt think I have it but I dont know what to do. She wants me to get done this testing called (Company Name Removed - They Spammed This Forum and are Banned) Testing. It checks for food intolerances but I heard it was a scam? Insurance does not cover it and it is pretty expensive.

Also I am really hoping to get a response because this is my very first post (:


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



Celiac.com Sponsor (A8-M):



AzizaRivers Apprentice

Welcome to the board! I'm curious how you were diagnosed with your allergy? I've heard conflicting information on "gluten allergies" and some people say you can't be allergic to gluten, as it's a protein. I don't know enough about that so I will just say that I'm wondering how you were diagnosed with that.

Either way, it seems that you have figured out gluten makes you sick, which is a feat in and of itself, so I congratulate you for having found a piece in the puzzle of getting your health together!

If you don't want to go through with a biopsy, you could consider yourself gluten intolerant anyway--you just won't be formally diagnosed with celiac. For many people this is fine: they just understand that I need to be 100% gluten free and don't feel a need to get a formal diagnosis. It's totally up to you and whatever you feel is right. A lot of people have trouble getting an "official" diagnosis of an intolerance because it's debated which testing is the most accurate, etc. The name of the testing your doctor suggested was removed because we're not supposed to mention specific medical companies on here (it can be considered advertising, though you did not mean it to in this case).

So, in summary, you don't really NEED to have any other testing done if you don't want to have it or if you don't "need" it for any other reason (sometimes people need a firm diagnosis for their family to be able to support them, or children need one to get school accommodations). If you are comfortable just knowing gluten makes you sick, just don't eat it. :)

mushroom Proficient

Hello, Ginger, and welcome.

Do you have an anaphylactic response to wheat or was this allergy discovered through blood testing or skin prick? Can you post on here what celiac tests they ran, what your results were, and what ranges the lab uses for reference? Sometimes results are not what they might appear to be :( Also can you retype the name of the test your homeopath wants run, leaving spaces in between the letters so the filters on the board won't remove the name?

The endoscopy procedure with biopsies is considered by most to be the best test for celiac disease, but may come out negative in the early stages of celiac, or if the doctor does not do enough biopsies or in the wrong places (because the damage can be patchy, not uniform). Most doctors will not do the biopsy unless you have positive blood results.

Can you tell us what symptoms you are having which might indicate celiac disease? Sorry for so many questions, but there are lots of posters here who would be happy to interpret these for you with a better idea of what is happening. :)

  • 3 weeks later...
DonnaMM Explorer

Yes be sure to determine what your doctor means by allergy to wheat. People often say celiac disease is an allergy when what what they are really referring to I the autoimmune intolerance some people experience when cosumig wheat. Symptoms of allergies include sneezing, difficulty breathing, vomiting and rashes. A gluten or wheat intolerance includes symptoms of diarrhea, weight loss, anemia as well as multiple other symptoms that vary person to person. I am curious as to how you found out you were allergic to wheat. Also this is my personal opinion but I am not crazy about about homeopathic doctors as they do not attend typical medical school. My opinion is to talk to a regular primary care doctor.

  • 1 month later...
Ginger Sturm Newbie

Welcome to the board! I'm curious how you were diagnosed with your allergy? I've heard conflicting information on "gluten allergies" and some people say you can't be allergic to gluten, as it's a protein. I don't know enough about that so I will just say that I'm wondering how you were diagnosed with that.

Either way, it seems that you have figured out gluten makes you sick, which is a feat in and of itself, so I congratulate you for having found a piece in the puzzle of getting your health together!

If you don't want to go through with a biopsy, you could consider yourself gluten intolerant anyway--you just won't be formally diagnosed with celiac. For many people this is fine: they just understand that I need to be 100% gluten free and don't feel a need to get a formal diagnosis. It's totally up to you and whatever you feel is right. A lot of people have trouble getting an "official" diagnosis of an intolerance because it's debated which testing is the most accurate, etc. The name of the testing your doctor suggested was removed because we're not supposed to mention specific medical companies on here (it can be considered advertising, though you did not mean it to in this case).

So, in summary, you don't really NEED to have any other testing done if you don't want to have it or if you don't "need" it for any other reason (sometimes people need a firm diagnosis for their family to be able to support them, or children need one to get school accommodations). If you are comfortable just knowing gluten makes you sick, just don't eat it. :)

Sorry I am just now replying! haha I didnt know that my post actually worked!

I know I have a high allergy to wheat, they just did a blood test for it and they checked for alot of other foods too. Wheat was the only thing it said I was allergic to. My celiac blood test came back negative but I think I have celiacs because I have been gluten free for 3 months and still feeling really nauseous and exhausted =/ Is it possible to be allergic to wheat and also have Celiac? thanks for the resposes!!

Ginger Sturm Newbie

Hello, Ginger, and welcome.

Do you have an anaphylactic response to wheat or was this allergy discovered through blood testing or skin prick? Can you post on here what celiac tests they ran, what your results were, and what ranges the lab uses for reference? Sometimes results are not what they might appear to be :( Also can you retype the name of the test your homeopath wants run, leaving spaces in between the letters so the filters on the board won't remove the name?

The endoscopy procedure with biopsies is considered by most to be the best test for celiac disease, but may come out negative in the early stages of celiac, or if the doctor does not do enough biopsies or in the wrong places (because the damage can be patchy, not uniform). Most doctors will not do the biopsy unless you have positive blood results.

Can you tell us what symptoms you are having which might indicate celiac disease? Sorry for so many questions, but there are lots of posters here who would be happy to interpret these for you with a better idea of what is happening. :)

My wheat allergy is affecting my digestive track =/ I dont think i am getting anaphylactic responses? Im just super nauseous all the time and really exhausted! I have been wheat free and gluten free for 3 months now and my stomach still gets upset every time i eat =/

I found out about my wheat allergy through some blood work and I'm really not sure what testing for celiacs I got done =/ I know they came back negative and nobody in my family that i know of has it.

My natualpathic doctor doesnt think i have celiac so she doesnt think i need to get the biopsy done. I have been gluten free and everything for 3 months so I just thought if it were an allergy i would already be feeling better? Is it possible to have a wheat allergy and celiacs? and the testing is called (Company Name Removed - They Spammed This Forum and are Banned) they have a website and seem pretty legit but I heard if i still have leaky gut then getting checked for food intolerances would be pointless

Thank you for your response!

Ginger Sturm Newbie

Yes be sure to determine what your doctor means by allergy to wheat. People often say celiac disease is an allergy when what what they are really referring to I the autoimmune intolerance some people experience when cosumig wheat. Symptoms of allergies include sneezing, difficulty breathing, vomiting and rashes. A gluten or wheat intolerance includes symptoms of diarrhea, weight loss, anemia as well as multiple other symptoms that vary person to person. I am curious as to how you found out you were allergic to wheat. Also this is my personal opinion but I am not crazy about about homeopathic doctors as they do not attend typical medical school. My opinion is to talk to a regular primary care doctor.

I think I only have an allergy to wheat, my whole digestive track seems to be messed up =/ I found out through a blood test

And I have seen regluar doctors and they just say that my wheat allergy shouldn't even be affecting me anymore and they just wanna go back and check my gall bladder and all the testing I have had done a 1000 times so I'm not sure? Seeing regluar doctors just kinda leave me more discouraged on getting well =/

thank you for your response!


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



Celiac.com Sponsor (A8-M):



Ginger Sturm Newbie

Here are some of my symptoms:

-nausea and vomiting

-exhausted constantly but have a hard time sleeping

-stomach pains in my upper stomach (inflamation)

-stomach pains all over

-bloated

-poops (not so much since I have been gluten free)

-terrible menstrual cycles(lots of pain and light headed)

-throat feeling tight/swollen all the time

-heartburn and idigestion

Basically when i was in 8th grade (5 years ago)I got strep throat and after a month of being on anti biotics i never got better so I had my tonsils removed. I never felt better after surgery and was constantly sick.I was younger and my sypmtoms werent really that bad to begin with. Nobody could figure out what was wrong though and they told me it was all in my head. .I knew they were wrong so I started taking lots of vitamins and eating better and I felt pretty good for most of my sophmore year in highschool.

At the beginning of my jr year i got on a birth conrtol shot and I was immediatly super sick again. Got all the same testing done and got off birth control and i was still super sick. I basically have been sick on and off since then. Around graduation this last May, my symptoms really came clear and I was the worst I had ever felt.

So i looked into getting checked for celiacs and whatnot, turns out I have a highh allergy to wheat. I have been gluten free and wheat free for 3 months now and just not really feeling that much better. maybe slight improvement

I thinking about getting my thyroid re checked but I'm just wondering if it can really take that long to heal from a wheat allergy. and what is leaky gut and is it real? Should I keep eating gluten free?

Thanks for listening!

mushroom Proficient

Ginger, you might be interested in reading this material prepared by the Mayo Clinic. It describes the difference between celiac disease (an autoimmune response to wheat/gluten) and a wheat allergy:

Open Original Shared Link

"Definition

By Mayo Clinic staff

Wheat allergy is an allergic reaction to foods containing wheat. It's one of the more common food allergies in children. Wheat can be found in many foods, including some you might never suspect, such as breads, cakes, breakfast cereals, pasta, crackers, beer, soy sauce and condiments, such as ketchup.

Avoiding wheat is the primary treatment for wheat allergy. Medications may be necessary to manage allergic reactions when you accidentally eat wheat.

Wheat allergy may sometimes be confused with celiac disease, but these conditions are different. A wheat allergy generates an allergy-causing antibody to proteins found in wheat. But, one particular protein in wheat

Ginger Sturm Newbie

Ginger, you might be interested in reading this material prepared by the Mayo Clinic. It describes the difference between celiac disease (an autoimmune response to wheat/gluten) and a wheat allergy:

Open Original Shared Link

"Definition

By Mayo Clinic staff

Wheat allergy is an allergic reaction to foods containing wheat. It's one of the more common food allergies in children. Wheat can be found in many foods, including some you might never suspect, such as breads, cakes, breakfast cereals, pasta, crackers, beer, soy sauce and condiments, such as ketchup.

Avoiding wheat is the primary treatment for wheat allergy. Medications may be necessary to manage allergic reactions when you accidentally eat wheat.

Wheat allergy may sometimes be confused with celiac disease, but these conditions are different. A wheat allergy generates an allergy-causing antibody to proteins found in wheat. But, one particular protein in wheat

Ginger Sturm Newbie

well hmmph =/ Should i already be feeling better from my wheat allergy then? Is it possble to have both? I'm confused

It just seems like I would already be feeling well?

mushroom Proficient

Well, it seems to me like you should forget what the medical "experts" have been telling you and sit down and analyze your own symptoms, do some more reading, and try to figure out for yourself what you most likely have.;There is plenty of information out there if you seek it out. Just do some google searches on the web and even on this forum. ;If you have a wheat "allergy" you will be more likely to be dead than better is what I was trying to say. On the other hand, if you are gluten sensitive / intolerant, (and you can be this without having celiac disease) it is going to take you a long time to heal from it, and it is perfectly possible to still be experiencing symptoms like you had before, particularly if you are still consuming dairy products. Gluten really messes up the digestive tract and interferes with the functions of the pancreas which produce the enzymes which digest our food, and all this can take years to heal fully

This post has been edited by mushroom at 1:25 p.m.

Ginger Sturm Newbie

Well, it seems to me like you should forget what the medical "experts" have been telling you and sit down and analyze your own symptoms, do some more reading, and try to figure out for yourself what you most likely have. There is plenty of information out there if you seek it out. Just do some google searches on the web and even on this forum. If you have a wheat "allergy" you will be more likely to be dead than better :blink: is what I was trying to say.

Ok thank you! and Im positive I have wheat allergy but it feeeeels like I have celiacs if that makes sense? Like I dont get hives or rashes or anything really externally or any troubles breathing. Its mainly all going on in my diegestive track. I think thats why I'm so confused! But thank you, I have a long ways to go and alot to learn!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,371
    • Most Online (within 30 mins)
      7,748

    PennyL
    Newest Member
    PennyL
    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

    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
×
×
  • 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.