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

Could it be Celiac disease?

Madmichie
 Share

Recommended Posts

Madmichie Newbie
Madmichie
Posted

Hello All,

How do I go about getting tested? Here's my story, I have been diagnosed with Hashimoto's and also have low ferritin and vit d. My symptoms are hair loss, tiredness, constipation, diarrhoea, headache, joint/muscle pain,  I look like a panda, have crazy mood swings and anxiety.

Whenever I talk to my doctors and tell them my symptoms, I think they just think I am a hypochondriac.

I have a telephone appointment next week to talk about my low vit d and ferritin. Can I request to be tested for celiac disease, even if there isn't any history of it in my family.

Thanks you

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

The fact that there isn't any history in the family of celiac disease doesn't mean that there wasn't any. It just means that no one was diagnosed with it. Many celiacs are largely asymptomatic for many years. We call that "silent celiac disease." You have many symptoms that directly or indirectly point to celiac disease. I would certainly request that from your doctor. Request a "full celiac disease panel." Don't go gluten free until the testing is done or you will invalidate the tests.

Madmichie Newbie
Madmichie
Posted
  • Author

Thank you, I will write that down, otherwise I'll forget to ask. 

trents Grand Master
trents
Posted

Here's some specifics: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Scott Adams Grand Master
Scott Adams
Posted

This blood screening article might also be helpful:

 

BuddhaBar Collaborator
BuddhaBar
Posted

It's frustrating when doctors think you're a hypochondriac and claim it's all in your head. It was "all in my head", "psychosomatic" or maybe "just IBS, it's common" and "stress-related" for several years until I bought a self-test kit and tested positive for antibodies. Took one more self-test just to be sure and PROUDLY laid both indicators which both showed two purple lines on my GP's desk and said "I told you I was sick" like a boss!
Try it! 😀
 

Chris Mckenna Newbie
Chris Mckenna
Posted

I have seven brothers and sisters, and none had Celiac, but were never tested

. My symptoms were very close to yours, and my personal doctor did not know anything about Celiac, and avoided the subject. I was tested once for Celiac and was told that I did not have it.  Somebody told me, after the symptoms continued, to be tested again.  The second test showed that I did have Celiac Disease.

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum @Chris Mckenna!

Madmichie Newbie
Madmichie
Posted
  • Author
1 hour ago, BuddhaBar said:

It's frustrating when doctors think you're a hypochondriac and claim it's all in your head. It was "all in my head", "psychosomatic" or maybe "just IBS, it's common" and "stress-related" for several years until I bought a self-test kit and tested positive for antibodies. Took one more self-test just to be sure and PROUDLY laid both indicators which both showed two purple lines on my GP's desk and said "I told you I was sick" like a boss!
Try it! 😀
 

Where can I get a self test kit from?

trents Grand Master
trents
Posted

https://www.imaware.health/at-home-blood-test/celiac-disease-screening

GodsGal Community Regular
GodsGal
Posted
6 hours ago, Scott Adams said:

This blood screening article might also be helpful:

 

 

14 hours ago, Madmichie said:

Hello All,

How do I go about getting tested? Here's my story, I have been diagnosed with Hashimoto's and also have low ferritin and vit d. My symptoms are hair loss, tiredness, constipation, diarrhoea, headache, joint/muscle pain,  I look like a panda, have crazy mood swings and anxiety.

Whenever I talk to my doctors and tell them my symptoms, I think they just think I am a hypochondriac.

I have a telephone appointment next week to talk about my low vit d and ferritin. Can I request to be tested for celiac disease, even if there isn't any history of it in my family.

Thanks you

Hi Madmichie!

Thanks for posting. Definitely request the testing. I am not a medical professional. Celiac disease can have a wide variety of symptoms. I feel like it is a disease that is not well known, even in the medical community. If the doctor seems dismissive or reluctant, I would ask for a referral or seek out a second opinion.

I didn't have any family history of celiac disease either, but I tested positive. After all I have learned about it, I suspect that it may have been undiagnosed in previous generations.

Keep us posted!

 

BuddhaBar Collaborator
BuddhaBar
Posted
11 hours ago, Madmichie said:

Where can I get a self test kit from?

The pharmacy. Google and check which pharmacy has them. It's a simple test and pretty accurate. Like a pregnancy test, but with blood instead of urine. I think the one I bought had 96% accuracy. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,029
    • Most Online (within 30 mins)
      7,748
    ChrisJ25
    Newest Member
    ChrisJ25
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Celiac pain relief

      By cristiana · Posted

      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      My son newly diagnosed

      By Nicola McGuire · Posted

      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
    • Scott Adams
      Celiac pain relief

      By Scott Adams · Posted

      Oh no, I'm sorry to hear about the accidental gluten! This article, and the comments below it, may be helpful:    
×
×
  • Create New...