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

My Doctor Thinks I Dont Have Celiac

Nadia2009

Recommended Posts

Nadia2009 Enthusiast
Nadia2009
Posted

Hi everyone,

He says my blood tests to check if I have celiac is unconclusive and also he doesn't think I have celiac since I have no other deficiency than vitamin D. I am about 60 for vit D and the optimum is in the range 75-100. I told him I actually take vit D in supplement but it is also the end of winter. He thinks my symptoms like feeling depressed and nausea are from my vit D deficiency.

I asked him about other symptoms such as feeling fuzzy and my ORL symptoms as I am sure that is coming from either gluten or wheat. I have asthma symptoms, persistent unexplained coughing, chronic sinusitis and I am a mucosity making manufacture. I also have fatigue. I have very few digestion related symptoms such as heartburn...no diarhea or constipation except when I mistreat my body and over eat...it is rare but it happens if I am upset or depressed.

I wonder now if my problems are not from things like candida overgrowth or wheat allergy. I am going to consult a naturopathic doctor to have food allergy testest. Some of the symptoms that made me think I could have celiac are I always had less resistant teeth than all my family even though I am the one who never miss a check up or cleaning. I had some mineral deficiencies as a teen and young adult. I have a sensitive estomac that can get upset easily. I can vomit easily and I also have acid reflux. Usually the triggers for my acid reflux are I believe sugar, fat or pasta with tomato sauce, pastries etc. But I know how to control that after reading the book PH miracle and understanding about acid alkaline ph of food. Usually my estomac doesnt like too much fat or sugar and the association of both is worst. I always thought I just had too much acidity and I know that my teeth problems start in the estomach or somewhere in the digestive system. But then, lately I wondered if I couldn't also be celiac. It is interesting how wheat allergy, celiac disease and candida overgrowth have some commun symptoms.

My GP thinks I should take vit D for 2 months and then if I still have a deficiency, he may send me for the colonscopy. I have no vit B or iron deficiency. But I always take vit B I take vit B 50 complex all year long sometimes, I take B 100. I am also a conscious eater never fast food or pre-pakaged food. I eat all my veggies fresh no frozen or cans (or extremely rare).

My doctor is really a nice guy and he does listen to me even if I bombard him with questions and comments but for now he thinks I dont need a colonscopy. But he wanted to send me for a sleep study after I told him I know I had another study from many years ago. I told him forget the sleep apnea I already know I have it and being a woman with no thick neck and not being overweight, I think the only reason why I can stop breathing at night is the same reason why I have some asthma symptoms...my guess is that everything must be swollen inside my mouth after eating some food. I had my tonsils removed when I was 6 and all the time I was growing up I had all the "is" laryngitis, pharyngitis, sinusitis...you name it. I had loads of antibiotics while growing up...sadly it was the time doctors gave antibiotics for every cough and all they did was giving me stained teeth.

Anyway, I will stick around this forum and keep learning. I am glad I know the existence of celiac...I have never heard of it before this year but it is good to know even if after checking everything I don't have it. I like to be informed as we never know anybody can develop celiac and some statistics say 1/10 people has gluten intolerance (1/100 has celiac). Maybe I am among those who have the intolerance without the vili damage to be called celiac.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Would you kindly post the lab results of your blood work for Celiac. I'm not sure what your doctor means by "inconclusive".

And welcome!

Nadia2009 Enthusiast
Nadia2009
Posted
  • Author
Would you kindly post the lab results of your blood work for Celiac. I'm not sure what your doctor means by "inconclusive".

And welcome!

No problem. I am going to see him on June 2nd and I will ask him a copy of the results. I forgot to do it the last time but he told me 2 out of the 3 tests were negative and the other one was higher.

Serversymptoms Contributor
Serversymptoms
Posted

Did you get a allergy test/ blood test also? If not, see if your doctor can do so. If your doctor cant, ask to be referred to a allergist.

  • 2 weeks later...
Nadia2009 Enthusiast
Nadia2009
Posted
  • Author

My lab results are:

Gliadin Ab IgA

says result= 5

Gliadin Ab IgG

says attention

21

Units: KEU/L and Reference range is <20 for IgA and IgG.

Endomysial Antibodies is Negative

The last column is FN Loc and 70 is written on the line of Gliadin ab IgA

So tell me, what are they saying. I am OK except the IgG is a bit off?

lizard00 Enthusiast
lizard00
Posted

It unfortunately appears that he did not run the full celiac panel.

IgG is not as specific to celiac as the IgA, but your elevated level does indicate something is going on.

It doesn't look like he ran the tTG tests (tissue-transglutaminase), which are pretty specific to celiac, or a total serum IgA which would indicate whether or not you have an IgA deficiency. If you are IgA deficient, all IgA based tests are pretty much worthless.

To comment on your symptoms, I did not have a lot of GI symptoms either. I was nauseaous... that was about it. My two most severe symptoms were headaches and fatigue. It was absolutely awful. A vit D deficiency is very common with celiac. Even after a year on the diet, I was low in vit D. You very well may be on to whatever is making you sick. Don't let the docs get you hung up on lack of GI symptoms, celiac has a symptom list that surpasses just GI problems.

If you are not gluten-free already, maybe you could have the doc do the complete celiac panel. It could prove to be more insightful.

Nadia2009 Enthusiast
Nadia2009
Posted
  • Author
It unfortunately appears that he did not run the full celiac panel.

IgG is not as specific to celiac as the IgA, but your elevated level does indicate something is going on.

It doesn't look like he ran the tTG tests (tissue-transglutaminase), which are pretty specific to celiac, or a total serum IgA which would indicate whether or not you have an IgA deficiency. If you are IgA deficient, all IgA based tests are pretty much worthless.

To comment on your symptoms, I did not have a lot of GI symptoms either. I was nauseaous... that was about it. My two most severe symptoms were headaches and fatigue. It was absolutely awful. A vit D deficiency is very common with celiac. Even after a year on the diet, I was low in vit D. You very well may be on to whatever is making you sick. Don't let the docs get you hung up on lack of GI symptoms, celiac has a symptom list that surpasses just GI problems.

If you are not gluten-free already, maybe you could have the doc do the complete celiac panel. It could prove to be more insightful.

So, what's the complete celiac panel? Would the tTG complete my test or I need even more? Please let me know what are the different tests in a complete panel. My doctor doesn't know much about celiac and he was checking on his computer before he prescribed the tests but he is willing to listen.

I am almost off gluten but it happens that I eat a little bit. I had a few bites of pita bread last week on Thursday and felt sick for 2 days. Also, had a breakfast containing some gluten and I noticed I noticed my estomac more than usual. Also, noticed that I felt full few hours after my lunch when I had a small lunch made of some soup and a fruit.

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

Sorry I am having a bit of a life trauma at the moment, so I have decided to drink. So if may information is cloudy or my statistic is wrong ~ someone kindly correct it.

Some where about 30% of diagnosed Celiacs are IGA deficient. So the test for your total IGA is important to look at in the Celiac panel. If you do not have the normal IGA function, you can not have an elevated IGA.

Your GP should refer you to a gastroenterologist. The gastroenterologist will rerun the tests in most cases.

jerseyangel Proficient
jerseyangel
Posted
So, what's the complete celiac panel?

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Ask that they run the whole thing :)

Nadia2009 Enthusiast
Nadia2009
Posted
  • Author
Did you get a allergy test/ blood test also? If not, see if your doctor can do so. If your doctor cant, ask to be referred to a allergist.

Sorry for the late answer. I just saw your message. No, I didn't have allergy testing done but I am going to do it now. I have an appointment with a naturopathic doctor and my doctor want me to see an allergist but he doesn't know anyone who does food allergies so I just decided I should see a naturopathic doctor.

I have some other symptoms who aren't helping...making things more complicated. I told my doctor about a sleep study I had done many years ago and that showed a sleep apnea and these latest week, I feel breathless or need to bread loud (don't know how to say that better English isn't my first language). Last spring it was the same thing and my doctor sent me for a stress test EGC I believe and that came normal. He thought I just had some stress. I am 41 and it is the first time of my life I wondered hey maybe I have cardiovascular symptoms and I am not so much in best shape don't exercise regularly but I am pretty active don't drive walk often and take stairs I actually run on the stairs and tht's maybe not indicated I am not anymore 20. And I have a job that doesn't let me sit down much but that also could be a source of stress I am a teacher. So, now my doctor wants me to check for asthma. This is going to be the second time I am being checked for asthma in the last 5 years. I also have the equivalent of what you Americans call anxiety attack. He also want me to take a sleep study but I think the reason why I had have sleep apnea is wheat or gluten which are clogging my respiratory organs. One thing that is clear for me is that there is a clear incicidence of the food containing wheat or gluten on my breathing and ORL symptoms.

So, now my doctor is concerned with the asthma symptoms and I have many other things to think about like my blood circulation. My feet and legs are so cold that they hurt and I can't just go sleep without trying to bring them to life. I am thinking I might have Raynaud syndrom.

It is funny how I didn't want to see a naturopathic doctor before when a friend of mine suggested. I thought she needed (she had diabetes while being pregnant and after her baby) because she didn't know much about nutrition and that I had read enough books on nutrition and natural medicine that I didnt need any special doctor! :lol:

Nadia2009 Enthusiast
Nadia2009
Posted
  • Author
Sorry I am having a bit of a life trauma at the moment, so I have decided to drink. So if may information is cloudy or my statistic is wrong ~ someone kindly correct it.

Some where about 30% of diagnosed Celiacs are IGA deficient. So the test for your total IGA is important to look at in the Celiac panel. If you do not have the normal IGA function, you can not have an elevated IGA.

Your GP should refer you to a gastroenterologist. The gastroenterologist will rerun the tests in most cases.

No problem and sorry to hear you are having a life trauma. Hope things will be alright soon.

Thank you but didn't get what you said as I am not familiar with all the test names. They are many IGAs which one are you talking about? On the 3 tests I did my IGA is 5 and the normal range says <20.

Nadia2009 Enthusiast
Nadia2009
Posted
  • Author
Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Ask that they run the whole thing :)

Should I do the whole thing or just do the ones that were missing like the Anti-tissue Transglutaminase?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.