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

How To Test For Gluten Sensitivity...celiacs Negative

msb11

Recommended Posts

msb11 Newbie
msb11
Posted

Both mine and my daughter's celiacs panels came back negative...but, I am almost 100% convinced that this is what it is. It was my dermatologist that ran the panel and she was not too helpful when I wanted to go deeper into the gluten issue (my hair falling out is why I went to the DR in the first place so that is why I was at the dermatologist). Instead I have been referred to derm at Mayo clinic...

What is the testing for gluten sensitivity...Is different than celiacs? I went ahead and found a holistic DR in my area and made an appointment without a referral, but should I press this issue?

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

testing is basically the same... im guessing when the doc doesnt see enough of a "gold standard" whether it's a super high ttg number or a positive biopsy, then he or she will label you as "gluten sensitive". some docs may diagnose you as celiac with just your experience on the diet.

my doctor wanted a positive biopsy, but my insurance wouldnt cover it... so he labeled me as "gluten sensitive"... but he didnt look at all of my test results untill i brought them back this last august, plus my genetic results, plus the DH on my stomach... to which he agreed that he believes i am Celiac.

so, you see, its very complicated- especially if you're getting "negative" or "inconclusive" results.

your first test may not have been comprehensive enough, or maybe you weren't consuming enough gluten, OR you had a false negative.

do you have a copy of your blood test?? it would be a good idea to get a copy and understand what it means. if you feel comfortable, you can post it here- members love to help.

did you say you were getting an endoscopy soon?? or just being referred to a Derm?

cassP Contributor
cassP
Posted

OOOHHH & PS- usually the hair falling out is a symptom of a hypothyroid (which btw many celiacs or family members of celiacs have)- you should get your thyroid checked out!! your PCP can run that easy..

ive been shedding more hair lately... and 4 years ago my TSH was borderline- so im gonna go in for that test soon.

msb11 Newbie
msb11
Posted
  • Author

They have checked my thyroid, iron, hormones, etc...and did a scalp biopsy for lupus.

The dermatologist has referred my to the dermatology center at the Mayo clinic. I just think that they know so little about celiacs and gluten sensitivity that they do not think it could possibly be the cause. I have had 2 blood tests for lupus come back negative, but he is still insistent on going forward with that being the cause of my hair falling out.

I am hoping that the holistic doctor that I am seeing Thursday will be more willing to look deeper into gluten possibly being the cause, but I can't wait any longer and am going to stop eating gluten today...I am seriously becoming so depressed because of this. If I feel better gluten free, then I will know that gluten is the cause.

cassP Contributor
cassP
Posted

They have checked my thyroid, iron, hormones, etc...and did a scalp biopsy for lupus.

The dermatologist has referred my to the dermatology center at the Mayo clinic. I just think that they know so little about celiacs and gluten sensitivity that they do not think it could possibly be the cause. I have had 2 blood tests for lupus come back negative, but he is still insistent on going forward with that being the cause of my hair falling out.

I am hoping that the holistic doctor that I am seeing Thursday will be more willing to look deeper into gluten possibly being the cause, but I can't wait any longer and am going to stop eating gluten today...I am seriously becoming so depressed because of this. If I feel better gluten free, then I will know that gluten is the cause.

GOOD for you- you have to listen to your body!! are you sure your thyroid was ok??? it's so classic- gluten issues/hair falling out to be your thyroid... or maybe its stress.... but again, sorry , im not a doc.

they tested me for Lupus and Sjorgens for a year and a 1/2 when i was a kid.... why they never thought to test for ANY OTHER Autoimmune Diseases INCLUDING Celiac is Beyond me!!!! why these docs are satisfied with just shrugging their shoulders and saying "i dont know" is beyond me. there's always an answer somewhere... geez louise.

i dont know about hair falling out as being specific to gluten, but i have had all of these symptoms from gluten: Dandruff, Excema, Psoriasis, and DH.

good luck

abonadea Newbie
abonadea
Posted

i was diagnosed with celiac disease over 30 years ago, by an iridologist. last year my MD had me get tested, since there are now known blood tests to run, and he is a "text-book" MD. however, he didn't know you had to be consuming gluten for the tests to come back positive. when the test came back negative (i've been gluten-free for over 30 years with a short exception) his response was, "well you can continue to live gluten free if you want." upon learning this result, i researched the issue and gave him the information regarding the relationship between gluten consumption and test results. I was required to find that informaton for myself. i was also not willing to put my body through the discomforts and health risks, which for me are apparent, of consuming enough gluten to have a definite effect on the test results. we must remember that a large percentage of MD's have limited knowledge of nutritional matters beyond low-iron anemia.

also, i (as do many celiacs) tested positive for hypothyriodism in my early 30's. i inherited this from my mother. my sister has continued to test negative. she chooses not to treat her body as though she has no thyriod issues (and certainly not gluten issues) but continues to exhibit many of the symptoms of hypothyriodsm.

my point is, these are related diagnosis' and both have tests with a high risk/percentage of false negatives. please listen to your body, and understand what factors may effect the outcome, when interpreting these types of test results.

GFinDC Veteran
GFinDC
Posted

If you do go gluten-free now, then any testing for celiac from now on will be less reliable. Another celiac disease test they can do is an endoscopy, where they take tissue samples and look for villi degradation. If you want that done, you should stay on gluten until it is complete. But the benefit of a diagnosis is something you have to decide on. Either positive or negative diagnosis doesn't matter if gluten makes you sick. The thing to do is stop eating it so you can feel better. Regardless of test results.

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

Celiac.com Sponsor (A8-M):


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. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    3. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    5. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,877
    • Most Online (within 30 mins)
      7,748
    Christian Konig
    Newest Member
    Christian Konig
    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

    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
×
×
  • 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.