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.

  • 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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.