Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Wait, What? Can A Doctor Suggest Celiac Base On This?


Looking for answers

Recommended Posts

Looking for answers Contributor

*** Reposting due to error in first posting - I didn't understand results***

Hi, I went gluten free five years ago after two decades of gastro issues, chronic infections, etc. I had a biospy done after going gluten-free and the results were negative. I've also had enterolab run my genes and those showed gluten sensitivity genes but not Celiac, so I've adhered to my gluten-free diet knowing I can't eat it whether or not I have Celiac Disease.

My doctor doesn't usually push tests on me but the other day he said he wanted to run a Celiac Panel. This is after five years of gluten-free (although I know it sneaks it's way it here and there by accident only). Anways, I argued that it was a waste of time but he pushed for them anyways. Yesterday he emailed me with this:

"The results do suggest Celiac. The TTG IGA would be elevated if you eating foods that stimulate the immune system, but would be negative with a gluten free diet. The tTG IgG indicates that your body has been stimulated in the past. So, since you are on a gluten free diet, we expect the IgA to be negative."

Here are the actual results:

TTG Antibody, IGA <3 (Reference range negative <5)

Endomysial Antibody (IGA) - negative

Immuoglobulin A 381 (81-463)

Can he really diagnose based on my Immuoglobulin A results? Can't they be elevated for other reasons? I'm so confused because the results are still in range. Any explanation could really help.

To reiterate I will continue a gluten-free diet, I don't care whether I actually have Celiac. However, I would like to understand this test better.

Thanks!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

*** Reposting due to error in first posting - I didn't understand results***

Hi, I went gluten free five years ago after two decades of gastro issues, chronic infections, etc. I had a biospy done after going gluten-free and the results were negative. I've also had enterolab run my genes and those showed gluten sensitivity genes but not Celiac, so I've adhered to my gluten-free diet knowing I can't eat it whether or not I have Celiac Disease.

My doctor doesn't usually push tests on me but the other day he said he wanted to run a Celiac Panel. This is after five years of gluten-free (although I know it sneaks it's way it here and there by accident only). Anways, I argued that it was a waste of time but he pushed for them anyways. Yesterday he emailed me with this:

"The results do suggest Celiac. The TTG IGA would be elevated if you eating foods that stimulate the immune system, but would be negative with a gluten free diet. The tTG IgG indicates that your body has been stimulated in the past. So, since you are on a gluten free diet, we expect the IgA to be negative."

Here are the actual results:

TTG Antibody, IGA <3 (Reference range negative <5)

Endomysial Antibody (IGA) - negative

Immuoglobulin A 381 (81-463)

Can he really diagnose based on my Immuoglobulin A results? Can't they be elevated for other reasons? I'm so confused because the results are still in range. Any explanation could really help.

To reiterate I will continue a gluten-free diet, I don't care whether I actually have Celiac. However, I would like to understand this test better.

Thanks!

Immuoglobulin A 381 (81-463)

This is your total IGA. That is in normal ranges which means if your original tests at diagnosis showed an elevated IGA in the celiac tests then yes that would be diagnostic. That the numbers have gone down to normal levels would show that you are doing well on the diet.

Looking for answers Contributor

Ravenwood, thank you, you are always a great source of knowledge here. The problem is I was never given any blood tests that I know of - just the biopsy, which was negative. However, I had already been gluten free months before it was performed.

Now my doctor sees the test scores I posted and says it suggests celiac. I don't get it!

Skylark Collaborator

The three tests you have posted are within the reference ranges. That means the results are normal. Where is the elevated tTG IgG that your doctor is referring to? That would be a sign of autoimmunity.

ravenwoodglass Mentor

The three tests you have posted are within the reference ranges. That means the results are normal. Where is the elevated tTG IgG that your doctor is referring to? That would be a sign of autoimmunity.

That was posted in this thread

Skylark Collaborator

Looking for Answers (gee, you need a better handle) said she was reposting because the results she put in the other thread were wrong. The 381 number was apparently total IgA. We still don't have the TTG IgG number her doctor is talking about.

Looking for answers Contributor

The three tests you have posted are within the reference ranges. That means the results are normal. Where is the elevated tTG IgG that your doctor is referring to? That would be a sign of autoimmunity.

They didn't test it since I'm not IGA deficient, which is why his diagnosis doesn't make sense. :unsure:


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

They didn't test it since I'm not IGA deficient, which is why his diagnosis doesn't make sense. :unsure:

No wonder you're confused. I am too! Can you call the office and ask?

Looking for answers Contributor

I left a message for my doctor, so I guess I'll have to wait and see how he came to this conclusion. I was just thinking I must be overlooking something and thought you guys may see something I'm not. I'm glad I'm not the only one confused!!!

Looking for answers Contributor

Okay, so I challenged my doctor's findings, and got this email this morning:

I looked at the results again, and I am clearer now on the findings. The testing we just did does not confirm celiac disease. The IgA that was in the 300 range is your total IgA. There are a small number of people who do not make IgA (which is associated with the gut) and if so, then the IgG test is done to confirm their likelihood of having the condition. So, the overall results are normal. Either way, if you feel better on a gluten free diet, that is a better way to go than based on these test results. I have attached something that I found helpful to interpret the results. - SW

And, then I emailed him back and said this makes sense based on the information I received from my very knowlegable friends on this board. I told him I often wonder what my results would be like if I were eating gluten for a month before these tests, and here's what he said back:

The tests took more effort to interpret. I do think they may look different if you were challenging your body with gluten, but definitely not worth the ill effects

Skylark Collaborator

Total IgA has nothing to do with celiac antibodies. It's a measure of whether your immune system produces an appropriate amount of IgA overall, and therefore whether your body is capable of making celiac antibodies. In the case of IgA deficiency, the celiac antibodies are IgG, and require a different test to detect. The celiac antibodies are a small fraction of all the different antibodies your immune system is producing so gluten wouldn't affect your total IgA.

If you don't have any celiac antibodies in your blood, you're doing fine on the diet. As your doctor says, it's not worth challenging yourself with gluten. You might make yourself very sick and still come up negative on the celiac bloodwork anyway.

nora-n Rookie

yes, the total IgA is not a celiac test.

I have seen abstracts on www.pubmed.com where they put diagnosed celiac children back on gluten (something they used to do before....) and it took from 6 weeks to several years for all to relapse, but relapse they did. Another one said that most relapsed after six months. So it might take some while.

I did a gluten challenge, and the effects were dramatic, firstly the biopsy was negative since I was biopsied after five weeks and no place in the literature I can see someone was positive after five weeks, but afterwards I lost 20 kg and I had to gradually double my thyroxine doseage afterwards despite being totally gluten-free, and then I had to reduce it back to nornal. The ferritin dropped too and has now jumped higher than ever, to 100 now. The doctors told me they have proven that I cannot possibly be celiac. (because of the negative biopsy, and the negative ttg test before going back on gluten.

BS.

bottom line: I can see that the gluten challenge caused lots of damage that took a while to go into effect, I lost 20 kg and had to increase thyroxine doseage for exmple. That lasted up to a year.

My fatigue did not resolve until after seven months off gluten after this endoscopy at the five week mark. I went gluten-free again after the endoscopy.

But, here in Europe lots of patients go back on gluten to get a diagnosis and endure the symptoms. I think most of them do that.

nora

Looking for answers Contributor

Thank you. I've ultimately decided not to do the challenge. Although I don't have symptoms, I've already been diagnosed with Sjogren's and have an under active thyroid, both problems have not progressed since going gluten-free. I'm too afraid to put my body through the challenge and risk having these flare up again...or worse, coming down with yet another autoimmune disorder.

Thanks to everyone for their responses...so many nice, helpful people here.

nora-n Rookie

I see.

The argument about the risk of getting more autoimmune illnessess is quite weighty.

ravenwoodglass Mentor

"Hi, I went gluten free five years ago after two decades of gastro issues, chronic infections, etc. I had a biospy done after going gluten-free and the results were negative. I've also had enterolab run my genes and those showed gluten sensitivity genes but not Celiac, so I've adhered to my gluten-free diet knowing I can't eat it whether or not I have Celiac Disease.

My doctor doesn't usually push tests on me but the other day he said he wanted to run a Celiac Panel. This is after five years of gluten-free (although I know it sneaks it's way it here and there by accident only). Anways, I argued that it was a waste of time but he pushed for them anyways."

I don't know how I missed this when you first posted but I did. If you have been gluten free for 5 years there is no way without a lengthy challenge that your doctor can tell you whether you are celiac or not. Your doctor doesn't know much about celiac IMHO. The choice to do a long challenge is yours and since you know gluten has negative effects on your system I think you are wise to not go with one. Gluten 'sensitive' genes can be just as bad as 'celiac' associated genes and in my opinion they are just using different terms for the same thing. It seems that the main difference, to me anyway, are the systems that are most severely effected.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,191
    • Most Online (within 30 mins)
      7,748

    teresa1955
    Newest Member
    teresa1955
    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

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...