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

I Think I Found A Keeper

cahill

By cahill
in Coping with Celiac Disease

Recommended Posts

cahill Collaborator
cahill
Posted

I am not diagnosed . I have been gluten free for about 18 months and still am having some problems . I insisted my PCP ( whom I am about to fire)send me to an endocrinologist (( and an allergist, and gastroenterologists )),,, I take thyroid meds and have some concerns about changes with my thyroid,, So after I INSIST she refer me to an endocrinologist I get the appt and go.

This is the FIRST doc in forever, maybe ever to actually LISTEN TO ME :D

I walked in , not expecting much,just an evaluation of my thyroid and the meds I take.

SHE ACTUALLY LISTEN TO ME when I was talking to her and describing what was going on,my symptoms even those ,maybe, not related to my thyroid.

Then it happened,,,, the first doc to ever bring up celiacs before I do,, she asked if I had been tested for celiacs, I say "" my doc tested me for celiacs after I was gluten free for about 10 months and said it would still show up if I had celiacs even though I was already gluten -free"".

She did not say anything but the look on her face was priceless,,Then she says" did going gluten free help?? :D , I say yes it did tremendously but there is still something else going on .

We talked a bit longer and then she says we need to do a FULL celiac panel and test for some additional autoimmune disease that are associated with celiacs.

I did not feel rush , I felt like she actually listened and HEARD what I was saying . It was worth the 2 hour drive ,each way ,to see her

I think she is a keeper :D

did i mention she actually listened to what I said ^_^

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

Glad you found a keeper.It isalways a PLUS when a mainstream doc will actually listen... Would you share the doctors name for others who may be interested...as they are hard to find, good ones that is!! thanks

mamaw

cassP Contributor
cassP
Posted

yay for u :) that's awesome!

even tho sometimes my Gi & Endo r not completely up to date- they are wonderful and spend a lot of time with me & listen. they seem to love their job. my Gi even told me to get online and find some gluten free communities- that i could probably learn more than he knows :)

my Endo took notes during my visit and wanted to do some research- they both seemed to enjoy that i knew what i was talking about and we could kind of talk on a similar level.

my PCP is another story... but whatchya gonna do, right

IrishHeart Veteran
IrishHeart
Posted

FANTASTIC!! She IS a keeper!!! I am very happy for you, chill. :D :D :D

Please, please make sure she checks your B-12 and FOLATE levels???? this is a MAJOR issue in celiac disease and kept me from feeling any better.

BTW, this happened to me too. I was gluten-free for 5 weeks when the functional med doc I consulted did the IgG test and he said it would not affect it and it was neg and we all know that is BS!!!...so I listened to him and went back to eating gluten for another 7 mos, and went waaaay downhill before deciding he was wrong. Went back to the PC doc who said it IS celiac and to stay gluten-free forever--no MATTER WHat THE TEST SAYS-- and now, he is my "keeper" (even tho he could not seem to see it for 3 years and sent me to many other specialists and his own children are celiacs!!!) :blink:

I am wondering...is she asking you to ingest gluten for the test? Because otherwise, won't you just get the same false negative result??

cahill Collaborator
cahill
Posted
  • Author

I am wondering...is she asking you to ingest gluten for the test? Because otherwise, won't you just get the same false negative result??

My PCP Only tested for the gliadin AB (IGA), (TTG) AB,IGA and IGA,SERUM

All came in within negative or normal ranges Because I was gluten free

My new doc is looking at the genetics , I believe it is the DQ2 and DQ8 to see if it is possible that I have celiacs,,

we agreed that with everything else going on doing a gluten challenge is not a good idea.

I am already gluten free and plan on stay that way no matter what.So taking that into consideration her major concern is other auto-immune diseases (possibly associated with celiacs )going undiagnosed

IrishHeart Veteran
IrishHeart
Posted

My PCP Only tested for the gliadin AB (IGA), (TTG) AB,IGA and IGA,SERUM

All came in within negative or normal ranges Because I was gluten free

My new doc is looking at the genetics , I believe it is the DQ2 and DQ8 to see if it is possible that I have celiacs,,

we agreed that with everything else going on doing a gluten challenge is not a good idea.

I am already gluten free and plan on stay that way no matter what.So taking that into consideration her major concern is other auto-immune diseases going undiagnosed

WHEW!! I was so hoping she would not do that to you!

I am going to have the gene test done too because there is no way in hell I am eating it for a biopsy. My GI doc went down there in 2009 and NEVER did the biopsy--I know, what an idiot!!

The gene test is non-invasive and it is not really a diagnostic tool, they tell me, but more of an exclusionary test.

If there's no gene, it's not celiac disease...ALTHOUGH some people have an ODD GENE--NOT DQ2 or DQ8--and so, EVEN this test may not be our confirmation. There are other genes, I guess...sigh...it never ends. There is always the chance we would test NEG for everything, I guess. I don't care . I KNOW what ails me!!

No matter what, we remain gluten-free and as you say, she will follow through with other testing. That is all that matters!

I was relieved to have no other autoimmune stuff show up (whew) --I do have osteoarthritis and severe muscle/joint/bone pain and a ton of other things to keep me busy!!! My thyroid numbers are erratic, but stable for now.

One other thing...insist upon a bone density test if you have not already had one. Osteoporosis is common in us as well and newly diagnosed celiacs MUST have this checked. I am assuming you are my age---born in 1956?? :)

I wish you well!! Keep us posted!!

cahill Collaborator
cahill
Posted
  • Author

WHEW!! I was so hoping she would not do that to you!

I am going to have the gene test done too because there is no way in hell I am eating it for a biopsy. My GI doc went down there in 2009 and NEVER did the biopsy--I know, what an idiot!!

The gene test is non-invasive and it is not really a diagnostic tool, they tell me, but more of an exclusionary test.

If there's no gene, it's not celiac disease...ALTHOUGH some people have an ODD GENE--NOT DQ2 or DQ8--and so, EVEN this test may not be our confirmation. There are other genes, I guess...sigh...it never ends. There is always the chance we would test NEG for everything, I guess. I don't care . I KNOW what ails me!!

No matter what, we remain gluten-free and as you say, she will follow through with other testing. That is all that matters!

I was relieved to have no other autoimmune stuff show up (whew) --I do have osteoarthritis and severe muscle/joint/bone pain and a ton of other things to keep me busy!!! My thyroid numbers are erratic, but stable for now.

One other thing...insist upon a bone density test if you have not already had one. Osteoporosis is common in us as well and newly diagnosed celiacs MUST have this checked. I am assuming you are my age---born in 1956?? :)

I wish you well!! Keep us posted!!

yes, I was born in 1956 :lol: and I had a DEXA scan done last summer and it showed osteoporosis,,,** shrugs shoulders** what do ya do ,,, One of the MAJOR problems I have with my PCP is that she INSISTS I take meds for the osteoporosis and I refuse (( at least for now)) Hey Its my body :P I am trying the weigh bearing exercise and supplements for now :)

I may never have a firm diagnosis of celiacs but I am past caring about that now,,, I truly just want to be healthy and save my children and grandchildren some of the unnecessary pain and suffering I have endured

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I think you are doing the right thing in trying to restore your bone density naturally. There are too many indications that the bone the drugs make is not good bone :( My hubs has improved has bone density naturally. :)

cahill Collaborator
cahill
Posted
  • Author

yay for u :) that's awesome!

even tho sometimes my Gi & Endo r not completely up to date- they are wonderful and spend a lot of time with me & listen. they seem to love their job. my Gi even told me to get online and find some gluten free communities- that i could probably learn more than he knows :)

my Endo took notes during my visit and wanted to do some research- they both seemed to enjoy that i knew what i was talking about and we could kind of talk on a similar level.

my PCP is another story... but whatchya gonna do, right

as I said my PCP is soooo close to being fired :angry: I am just waiting for all the reports to get back to her before I change PCP,, I am not sure how much luck I will have finding a better one though :unsure:

I have an appointment with a gastroenterologists on the 18th of April,,, I could only hope I actually get one that know what they are doing/talking about :unsure:

Roda Rising Star
Roda
Posted

I would definatly like the name and location of the endocrinologist you saw too. My mom sees some guy in Erie and I just don't think I agree with him all the time. If need be, this person could be an alternative if she was to ever decide to go elsewhere.

cahill Collaborator
cahill
Posted
  • Author

I would definatly like the name and location of the endocrinologist you saw too. My mom sees some guy in Erie and I just don't think I agree with him all the time. If need be, this person could be an alternative if she was to ever decide to go elsewhere.

I sent you a PM :)

Roda Rising Star
Roda
Posted

Thanks!! :)

IrishHeart Veteran
IrishHeart
Posted

I agree with you about the "firm diagnosis"...My PC doctor and I agree...if it walks like a duck and quacks like a duck....it's a damn duck!! :lol:

I hope you get answers. I am glad you are in good hands now.

Maybe your PC doc--like mine--just needs to be "educated" (by you) about celiac. My guy's own children have celiac, yet he was not aware of how it manifests in adults. I bring him info all the time and he graciously accepts it. I think he feels really bad he missed all the signs in me. I am too tired to look for a new PC and I tried a lot of other doctors in the last 3 years and frankly, none of them are in the loop about this. Sigh....not even the gastro office I went to for 12 years!! they bungled this royally...I hear this story repeatedly from so many on here...

What is wrong with this picture??? :blink: No wonder so many are undiagnosed for an average of 11 years in this country.

LivesIntheSun Apprentice
LivesIntheSun
Posted

Are you guys in the States? I need someone like that, but in the UK...

cahill Collaborator
cahill
Posted
  • Author

Are you guys in the States? I need someone like that, but in the UK...

yes I am in the states,, northwestern Pennsylvania ,,I hope your able to find someone good in the UK :)

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. olivia11
      - olivia11 replied to olivia11's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      suggest gluten free food

      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    2. knitty kitty
      - knitty kitty replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent. People of Mediterranean descent have HLA DQ 7. People of Asian descent have HLA DQ 9. There's other Indigenous populations that have other HLA genes that code for Celiac disease. Are you still having symptoms? What do...
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      My journey is it gluten or fiber?

      There are eight essential B vitamins. They are all water soluble. Any excess of B vitamins is easily excreted by the kidneys. Thiamine is Vitamin B 1. Thiamine is safe and nontoxic even in high doses. Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily. The form of Thiamine in the supplements you mentioned is...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      My journey is it gluten or fiber?

      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
    5. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

      Neg for HLA dq8 and dq2
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,748
    • Most Online (within 30 mins)
      7,748
    NYC Sidewalk Repair
    Newest Member
    NYC Sidewalk Repair
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • olivia11
      suggest gluten free food

      By olivia11 · Posted

      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    • knitty kitty
      GI DX celiac despite neg serology and no biopsy

      By knitty kitty · Posted

      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      There are eight essential B vitamins.  They are all water soluble.  Any excess of B vitamins is easily excreted by the kidneys.   Thiamine is Vitamin B 1.  Thiamine is safe and nontoxic even in high doses.  Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily.   The form of Thiamine in the supplements you mentioned is Thiamine Mononitrate, a form that the body does not absorb well and does not utilize well.  Only about thirty percent of the amount on the label is actually absorbed in the small intestine.  Less than that can actually be used by the body.  Manufacturers add thiamine mononitrate to their products because it's cheap and shelf-stable.  Thiamine and other B vitamins break down when exposed to light and heat and over time.  Thiamine Mononitrate is a form that does not break down over time sitting on a shelf waiting for someone to buy them.  What makes Thiamine Mononitrate shelf stable makes it difficult for the body to turn into a useable form.  In fact, it takes more thiamine to turn it into a useable form.   Gastrointestinal Beriberi is a localized shortage of Thiamine in the gastrointestinal tract.  High carbohydrate meals can result in gastrointestinal symptoms of Gastric Beriberi.  Fiber is a type of carbohydrate.  So, high fiber/carbohydrate snacks could trigger Gastric Beriberi.   Since blood tests for Thiamine and other B vitamins are so inaccurate, the World Health Organization recommends trying Thiamine and looking for health improvement because it's safe and nontoxic.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Neg for HLA dq8 and dq2
×
×
  • 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.