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

Can Wheat Allergy Tests Rule Out Celiac?

gamma517

Recommended Posts

gamma517 Newbie
gamma517
Posted

I am 28 and appear to have developed many of the symptoms of Gluten Intolerance. The weird part for me, is that I didn't have noticable symptoms until about 2 years ago, and it's been slowly getting worse and worse. Although, from reading the personal experiences on this website, I still seem to be a mild case at the moment.

However, I had a food allergy test taken(IgG4 antibodies test). Wheat listed as only very mild allergy, where as milk was a severe allergy. This shocked me completely, because I've had bowls of cereal 5 days a week my entire life. So I then gave up milk for months, and it made zero difference in my symptoms....

I was in a tough situation before, and probably for the next year, so I don't have insurance. Knowing that, my doctor didn't really have any idea what my problem could be, and I couldn't afford alot of random tests, so I just took a wait and see approach.

I never went back to milk, and I never got better, but there was just too many possible things that could be causing my symptoms. Then I saw Celiac's could cause anemia, and it made me remember my doctor saying my bloodwork showed I was slightly anemic. I've never had that before, and it shouldn't ever happen to me since I eat Tons of iron and meat, etc.

So I looked around, and all the symptoms fit. Except that I've gained some weight instead of losing it, I think I have all the symptoms. They just aren't as severe as everyone here seems to have them, but I'm worried it will keep getting worse.(albeit slowly, apparently)

But I'm confused by my allergy test. Is it possible to have Gluten Intolerance when you only have a mild wheat allergy? Do you guys think it's possible I have this disease, or am I very confused about something?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Wheat allergy and celiac/gluten intolerance are two different things. People can have one or the other or both. Allergies are histamine reactions and tend to hit quickly after an allergenic substance comes into contact with us. Gluten intolerance and celiac are autoimmune antibody reactions and don't show up in allergy tests. Also not all celiacs are skinny, some of us gain weight when the disease first surfaces. Celiac also needs a trigger. That is usually an illness or a physical or mental stressor. Some of us can pinpoint it some of us can't. You could demand a celiac panel from your regular doctor, you could go with Enterolab tests which look for antibodies in the stool, or you could give the diet a good strict try and see if it helps. HOWEVER IF you choose to go gluten free before blood work or endo is done and then decide you want a doctors diagnosis you will need to go back on gluten for about 3 months to reactivate the antibodies and even then the risk of a false negative on blood and biopsy is still higher than we would like.

Molly-F Newbie
Molly-F
Posted

I live in Canada, so the cost didn't matter to me much. However I would still recommend investing in taking tests; it would be worth it to know what's really going on. Just don't avoid gluten before your tests, as I believe was mentioned above. I have a test on Wednesday and I've been eating gluten...thus I've been confined to the bathroom :unsure: . Anyway, I kind of hope you just have an intolerance, at least then there's less damage to your body.

I haven't experienced any weight loss either. In fact, with it being Easter and all, I've probably gained it if anything. My malnutrition seems to be non-existant as well, except for my anemia and low B12...this goes to show that you may not experience these symptoms at all...but they're different for everybody.

Anyway, best of luck. Please get better soon! :)

ravenwoodglass Mentor
ravenwoodglass
Posted

I kind of hope you just have an intolerance, at least then there's less damage to your body.

IMHO it is a common misconception that GI is less serious and causes less damage than celiac. Some including myself consider them to be simply differnt presentations of the same disease. With intolerance it can be other organs than the gut that sustain the most damage. People with DH, for example, are considered celiac but the main symptom can be skin issues with no gut issues. The antibodies can also attack the brain and other body systems. Take a look at my sig, almost all the issues I had were present for years before the celiac gut issues took hold. Some doctors would still consider me to be 'only' gluten intolerant because I don't show up in blood work.

Archived

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

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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.