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

On My Way To Being Diagnosed


maggie123

Recommended Posts

maggie123 Newbie

New to this site. have been reading alot about celiac recently and need to know more.

I was diagnosed with hypothyroidism about 8 years ago. recently my sister was diagnosed with celiac disease. With her persistence I asked the doc to do the bloodtest on me and it came back positive.

I have an endoscopy next week.

Knowing what I know now I will not be surprised if endo is positive. for the past 8 years I have blamed my thyroid problems for joint pain, constipation, bloating, gas, general fatique weight that

just will not budge! It is all so clear to me now!

So, I look forward to gathering all the info necessary for me to regain my heslth back!

Maggie123


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Welcome Maggie,

You won't find a better place to learn about Celiac. You will find great help here.

You already have a diagnosis of Celiac with positive blood work. An endoscopy can also confirm with a biopsy and sometimes visibly.

Let us know if we can help you with anything.

Darn210 Enthusiast

Welcome Maggie!!

Kudos to your sister for being persistent!! And kudos to you for listening to your sister!! Lots of info here along with a lot of helpful and caring people. Tell your sister to check out this forum, too.

GlutenWrangler Contributor

I agree, if you have positive bloodwork, you are already diagnosed with celiac disease. An endoscopy is trivial at this point in terms of diagnosis, but it may be helpful to assess your damage. If you have any specific questions, don't hesitate to ask. Otherwise I definitely recommend doing some reading on this site, it's a great resource. Good luck,

-Brian

markr Newbie
New to this site. have been reading alot about celiac recently and need to know more.

I was diagnosed with hypothyroidism about 8 years ago. recently my sister was diagnosed with celiac disease. With her persistence I asked the doc to do the bloodtest on me and it came back positive.

I have an endoscopy next week.

Knowing what I know now I will not be surprised if endo is positive. for the past 8 years I have blamed my thyroid problems for joint pain, constipation, bloating, gas, general fatique weight that

just will not budge! It is all so clear to me now!

So, I look forward to gathering all the info necessary for me to regain my heslth back!

Maggie123

Boy, do I relate to what you are saying. While you are being tested, make sure you check for diabetes. I have Type 1 diabetes for 26 years, and I just found out that I have celiac. It effects about 12 -15% of of Type 1 diabetics. Like you said: it is all so clear to me now! :huh:

Mark

BSinCO Newbie

I am glad to hear that you are seeking support so soon. I have been on a gluten, soy, dairy, corn, and tomato free diet for a year and a half now. I am just joining the forum tonight. I am still having health issues and am looking for some help and advice myself.

I have done so much research over the past year. Glutenfreegirl.com gives some great advice and links to other informative sites.

I hope you start to feel better soon.

:D

New to this site. have been reading alot about celiac recently and need to know more.

I was diagnosed with hypothyroidism about 8 years ago. recently my sister was diagnosed with celiac disease. With her persistence I asked the doc to do the bloodtest on me and it came back positive.

I have an endoscopy next week.

Knowing what I know now I will not be surprised if endo is positive. for the past 8 years I have blamed my thyroid problems for joint pain, constipation, bloating, gas, general fatique weight that

just will not budge! It is all so clear to me now!

So, I look forward to gathering all the info necessary for me to regain my heslth back!

Maggie123

maggie123 Newbie
Welcome Maggie,

You won't find a better place to learn about Celiac. You will find great help here.

You already have a diagnosis of Celiac with positive blood work. An endoscopy can also confirm with a biopsy and sometimes visibly.

Let us know if we can help you with anything.

Thanks for all your support. i will definitely keep you posted. Question - Kraft crunchy peanut butter-

safe for me to eat? It has been a morning staple for me for quite sometime on toast.

This is a great site and I know I will benefit from all you veteran Celiacers.

Maggie 123

Canada


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



Celiac.com Sponsor (A8-M):



maggie123 Newbie
Welcome Maggie!!

Kudos to your sister for being persistent!! And kudos to you for listening to your sister!! Lots of info here along with a lot of helpful and caring people. Tell your sister to check out this forum, too.

Had it not been for my sister I would never suspected celiac nor my doctor as he was quite surprised and I think he will really be surprised with endo results. He is a great doc but he

thinks this bloodwork was positive due to family markers showing up???I didnt say anything - the proof will be in the endo. It just goes to show that not all docs are familiar with this disease.

But it will be a learning curve for him and hopefully help others in his practice will benefit.

Big learning curve for me too!

Maggie 123

Canada

ravenwoodglass Mentor
Had it not been for my sister I would never suspected celiac nor my doctor as he was quite surprised and I think he will really be surprised with endo results. He is a great doc but he

thinks this bloodwork was positive due to family markers showing up???I didnt say anything - the proof will be in the endo. It just goes to show that not all docs are familiar with this disease.

But it will be a learning curve for him and hopefully help others in his practice will benefit.

Big learning curve for me too!

Maggie 123

Canada

If by some chance that endo comes back negative please ignore that result and do the diet anyway. The endo can miss a lot of us, so can the blood work but with a positive blood test you are already diagnosed. The proof is really in your response to the diet, don't let your doctor talk you out of it if the endo is not positive. There are doctors who with a positive on blood work but a negative on endo will tell folks it is okay to continue to eat gluten until the villi are damaged enough to show positive on endo. Don't let yours do that to you. You have found a great place for knowledge and support, welcome.

maggie123 Newbie
Welcome Maggie,

You won't find a better place to learn about Celiac. You will find great help here.

You already have a diagnosis of Celiac with positive blood work. An endoscopy can also confirm with a biopsy and sometimes visibly.

Let us know if we can help you with anything.

I need to know more about insomnia and the connection with celiac.

Any info on this. Thanks in advance.

Maggie 123

Darn210 Enthusiast
I need to know more about insomnia and the connection with celiac.

Any info on this. Thanks in advance.

Maggie 123

Maggie, there is a whole section devoted to sleep. I would browse through some of those threads and/or do some searches.

maggie123 Newbie
Maggie, there is a whole section devoted to sleep. I would browse through some of those threads and/or do some searches.

thanks Janet I will go there.

maggie 123

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.