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 An Allergist Diagnose?


jk17

Recommended Posts

jk17 Newbie

Hey, does any one know of an allergy specialist would be able to diagnose for Celiacs? Or maybe just identify a gluten allergy?


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



Celiac.com Sponsor (A8-M):



GlutenFreeManna Rising Star

Hey, does any one know of an allergy specialist would be able to diagnose for Celiacs? Or maybe just identify a gluten allergy?

There is no such thing as a "gluten allergy". You can be allergic to an individual gluten grain such as wheat allergy, but celiac is an autoimmune disease not an allergy. That said, SOME allergist may be familiar with celiac. I'm not sure if they would be able to order the tests or not though. Most allergist order allergy tests. If you suspect celiac you need to see your regualar dr or a GI dr. Your regualar dr can usually order the antibody tests but you might have to get a referral from your family dr to a GI.

ETA: BTW, I'm BOTH allergic to wheat and gltuen intolerant so it's possible to have both an allergy and an autoimmune disease. Just wanted to make sure you knew there was a difference.

ravenwoodglass Mentor

There is no such thing as a "gluten allergy". You can be allergic to an individual gluten grain such as wheat allergy, but celiac is an autoimmune disease not an allergy. That said, SOME allergist may be familiar with celiac. I'm not sure if they would be able to order the tests or not though. Most allergist order allergy tests. If you suspect celiac you need to see your regualar dr or a GI dr. Your regualar dr can usually order the antibody tests but you might have to get a referral from your family dr to a GI.

ETA: BTW, I'm BOTH allergic to wheat and gltuen intolerant so it's possible to have both an allergy and an autoimmune disease. Just wanted to make sure you knew there was a difference.

I agree completely with this but I have to add that as a person who shows false negative on blood tests my allergist literally saved my life. He was however one of the rare ones that would guide someone through an elimination diet after doing testing for true allergies. By the time I went to him I was close to death, no exaggeration, and once I reacted to adding wheat back in he did immediately refer me back to my clueless GI who confirmed that I did indeed have celiac despite the negative blood tests. To say that GI doctor was apologetic is an understatement and I had no problem getting him to blood test my children and biopsy one. My kids who according to their ped just had tummy problems because they didn't want to go to school both did test positive.

Your first step though is going to be getting a celiac panel done at your GP or GI doctors. Do not go gluten free until all your testing is finished.

GlutenFreeManna Rising Star

I agree completely with this but I have to add that as a person who shows false negative on blood tests my allergist literally saved my life. He was however one of the rare ones that would guide someone through an elimination diet after doing testing for true allergies. By the time I went to him I was close to death, no exaggeration, and once I reacted to adding wheat back in he did immediately refer me back to my clueless GI who confirmed that I did indeed have celiac despite the negative blood tests. To say that GI doctor was apologetic is an understatement and I had no problem getting him to blood test my children and biopsy one. My kids who according to their ped just had tummy problems because they didn't want to go to school both did test positive.

Your first step though is going to be getting a celiac panel done at your GP or GI doctors. Do not go gluten free until all your testing is finished.

Oh yes, I had forgotten about you being diagnosed by an allergist Raven. Sorry about that. My allergist knew what celiac/gluten intolerance was but he was a little incredulous when I read him my list of symptoms that went away when I went gluten-free. His jaw literally dropped and he asked me several times, "Really? Are you serious?" I wish I had found a great allergist like you that would have looked at all my symptoms that improved and diagnosed me. Mine just tested me for food alleries (I went because of a suspected dairy allergy so that was okay with me) and pushed heavily to test me for enivormental allergies--that's the allergist's bread and butter so to speak; If you have bad enough environmental allergies they can put you on allergy meds. I already knew I had problems with pollen, dust, mold and grass without having any tests. Most of those allergies got much less severe when I removed gluten and dairy so I didn't want drugs. Anyway I guess just like drs it depends on what type of allergist you go to see. OP you should certainly start with your family dr unless you are suspecting an actual allergy (closing of throat, nasal congestion, hives when eating something).

ravenwoodglass Mentor

Oh yes, I had forgotten about you being diagnosed by an allergist Raven. Sorry about that. My allergist knew what celiac/gluten intolerance was but he was a little incredulous when I read him my list of symptoms that went away when I went gluten-free. His jaw literally dropped and he asked me several times, "Really? Are you serious?" I wish I had found a great allergist like you that would have looked at all my symptoms that improved and diagnosed me. Mine just tested me for food alleries (I went because of a suspected dairy allergy so that was okay with me) and pushed heavily to test me for enivormental allergies--that's the allergist's bread and butter so to speak; If you have bad enough environmental allergies they can put you on allergy meds. I already knew I had problems with pollen, dust, mold and grass without having any tests. Most of those allergies got much less severe when I removed gluten and dairy so I didn't want drugs. Anyway I guess just like drs it depends on what type of allergist you go to see. OP you should certainly start with your family dr unless you are suspecting an actual allergy (closing of throat, nasal congestion, hives when eating something).

Yea he was a great doctor and very old school. He even sat across his desk typing on an old Underwood Typewriter using carbon paper as we talked. Technically he didn't diagnose me my GI doctor did but since all my doctors took my false negative blood work as a for sure I didn't have celiac I would have never been diagnosed without him. When I went back for a follow up with him after my official diagnosis I told him how happy I was to have just my tummy issues resolved and he stated not to be surprised if a lot of other stuff went away also. I of course didn't believe him. Glad I was wrong. He also said at that point that when I was allergic to 98 out of 99 things he tested me for he had strongly suspected celiac. He said my immune system was in 'hyperdrive' and was in attack mode with everything I came into contact with including myself. It wasn't long before most of those allergies went away. I wish all doctors were as wise as he was.

Bubba's Mom Enthusiast

Shortly after being DXed I was in the grocery store. I had to walk through the bakery section to get to the special foods. I got a feeling like my throat was closing and I couldn't breathe well. It was scary!

I've been getting allergy shots for pollen, grasses, molds, dog dander, etc. for the past 3 years. When I went to my allergist I told him about my Celiac DX and my reaction in the bakery. I asked him if I should be tested for food allergies,especially since I would now be trying foods and grains I hadn't eaten in the past.

The Allergist did a pin-prick testing a ton of things. I didn't react to anything..not even wheat. I was surprised at that.

He explained that there are allergies that fall into a category where there is no good testing for them. Celiac sort of falls into that category.

AND..you can have a sensitivity to gluten or other things and the tsts don't pick that up. It will still make you mighty ill though.

Long story..long (I gues?) it's best to start with your Primary care Dr. and stay on gluten until your testing is done.

Be aware that you can test negative in your blood work even if you have Celiac. I did. If that happens to you, and your Dr. doesn't refer you to a GI for an endoscope, I recommend a good trial run without any gluten to see how you feel. For a lot of people that's how they get their answers.

ravenwoodglass Mentor

He explained that there are allergies that fall into a category where there is no good testing for them. Celiac sort of falls into that category.

The reason why gluten grains don't show up in an allergy panel is because they are not allergies. Celiac is autoimmune and an intolerance rather than an allergy which is an entirely different sort of reaction. One can have both an allergy and intolerance though.


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



Celiac.com Sponsor (A8-M):



  • 5 years later...
Lilsaur Newbie
On 24/09/2011 at 4:24 AM, ravenwoodglass said:

 

I agree completely with this but I have to add that as a person who shows false negative on blood tests my allergist literally saved my life. He was however one of the rare ones that would guide someone through an elimination diet after doing testing for true allergies. By the time I went to him I was close to death, no exaggeration, and once I reacted to adding wheat back in he did immediately refer me back to my clueless GI who confirmed that I did indeed have celiac despite the negative blood tests. To say that GI doctor was apologetic is an understatement and I had no problem getting him to blood test my children and biopsy one. My kids who according to their ped just had tummy problems because they didn't want to go to school both did test positive.

Your first step though is going to be getting a celiac panel done at your GP or GI doctors. Do not go gluten free until all your testing is finished.

Omg yes. 

I was false neg. so sick. and dietician said go and see a gp that specialises in it. 

5 min into our apt he said im either celiac or extremely intolerant but that test was definitly false neg. 

 

So i imagine like a dietitian, your allergist should be pretty wise on ways to decern weather you are or not. 

 

 

Awol cast iron stomach Experienced

Ahhh as those above say it is a diverse path bouncing between multiple medical disciplines. I have had 3 different allergists and 2 gi' s. I believe soon my gi list will be increasing. I however need a break ! I have struggled with gi hospital admitting issues for 18-20 years.

My current allergist is more in-depth to the immune pathways than a typical allergist. The typical allergist looks for the "true"  IgE pathway.  People on here have to find someone who understands IgA or IgG pathways so the typical allergist learned about it, but is often  not indepth enough. Gi Dr' s can confirm that damage with endoscopy and getting those biopsies to those pathologists.

You can prick me for an IgE allergy and I'm not allergic in the traditional/typical sense, but I react in my own unique AWOL way. A small amount yes, but it is not instant and requires time.   Patience, and observation and it's not a true allergy IgE symptomology. The statistics say the average Dr appt is 15 minutes AWOL anthropology requires 45 minutes. Yes I've timed and tracked myself (science background)

This is why AWOL alludes diagnosis. AWOL' s cousin took 2 years and 10 Dr' s of various disciplines to get the Celiac diagnosis. AWOL is just not that tenacious, I guess my cousin got the "tenacity gene".  2 years oh goodness, I can't handle 6 days of gluten despite negative results. If they just did a home visit and suffered through it like my husband and children did... oh wait that's not measurable scientific proof forget it! Plus the 6 day home visit 24 hour observation Bill Oh My!

So Raven story is a unique almost intuitive,consultative, allergist Dr. how refreshing. My first allergist gave me the regular environmental panels 8 yrs ago as I struggled to communicate I was reacting on another pathway not IgE. The more recent one tested me for environmental and food allergies told me my normal environmental allergens, and then said I'll get you to someone else who is allergy/ immunology with gi and dieticians  because this requires more investigation then what I can do here.  At this point since I am negative even for the in-depth allergist. I'm back in gi-Ville. I'm told have 2 separate issues. I see it as one -evil gluten causitive agent that causes all the others.

AWOL journeys on.

If you find an allergist who gets it fantastic, but as many may say Raven' s got a gem right out of the gate. The rest may require a journey on the medical land game board. Don't give up and if all us fails when you get all the way around the game board,  reach negative results, frustration, and are at the brink of insanity, try taking gluten out of the diet. I know it's the last resort , I'm not suppose to tell you that, until you exhaust the diagnosis path, but for me and a few on here that's our only confirmation until technology "detects/acknowledges" us which ironically requires us to be lab rats along with the support of the celiac.com advocacy brigade.

We exist but are just waiting to be medically acknowledged. Celiac.com accepts us and helps us however they can in our no man's land. So the allergist may test us, but if the results are not within the parameters of the current diagnostics tests then you might be 

AWOL   on the gluten spectrum like me ;)

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
      133,330
    • 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.