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

Possible Celiac Disease?

samiam712

Recommended Posts

samiam712 Newbie
samiam712
Posted

Hi everyone,

I hope you can give me your input. I'm a 24 year old female. This past January I was diagnosed with Fibromyalgia/Chronic Fatigue Syndrome. The doctors also discovered I am Vitamin D deficient. Because of symptoms I have had in the past two months, I am beginning to suspect I may have Celiac Disease or a gluten allergy. Here are my symptoms:

-Constantly tired

-Nauseous

-Feel almost flu-like; head aches, sleepy, just a general gross feeling

-Diarrhea 5 days of the week, typically 2-3 times a day, often after eating

-Bloated

-Gas constantly

-Joint pain

-irritability

My general practice doctor has not been very helpful, she thinks maybe it is just stress since I am getting married in 3 weeks. I know myself and know it is not. It has gotten to be so unpleasant! I am seeing an Allergist this wednesday and wanted to know if there is anything specific I should ask to be tested for. On this board I have read about an Enterolab Test and a Celiac Panel. Is there anything else? I have been trying to see a Gastroernologist (sp?) but there are no appointments in the next month.

Also, my mom has Grave's Disease (hyperthyroid), my uncle has MS, and my cousin has Chrones, which are all auto-immune diseases, and Celiac is too I believe.

Please let me know of any good questions to ask the Allergist and any other tests you would recommend. Thanks so much.

Samantha

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
Hi everyone,

I hope you can give me your input. I'm a 24 year old female. This past January I was diagnosed with Fibromyalgia/Chronic Fatigue Syndrome. The doctors also discovered I am Vitamin D deficient. Because of symptoms I have had in the past two months, I am beginning to suspect I may have Celiac Disease or a gluten allergy. Here are my symptoms:

-Constantly tired

-Feel almost flu-like; head aches, sleepy, just a general gross feeling

-Diarrhea 5 days of the week, typically 2-3 times a day, often after eating

-Bloated

-Gas constantly

-Joint pain

-irritability

My general practice doctor has not been very helpful, she thinks maybe it is just stress since I am getting married in 3 weeks. I know myself and know it is not. It has gotten to be so unpleasant! I am seeing an Allergist this wednesday and wanted to know if there is anything specific I should ask to be tested for. On this board I have read about an Enterolab Test and a Celiac Panel. Is there anything else? I have been trying to see a Gastroernologist (sp?) but there are no appointments in the next month.

Also, my mom has Grave's Disease (hyperthyroid), my uncle has MS, and my cousin has Chrones, which are all auto-immune diseases, and Celiac is too I believe.

Please let me know of any good questions to ask the Allergist and any other tests you would recommend. Thanks so much.

Samantha

Hi Samantha,

Welcome here!

If I were in your position, I would require my doctor to run a Celiac Panel. It is a series of four tests. It is not always accurate, but a great place to start. Do not go gluten free prior to testing. If you do have Celiac (with a strong family history) I don't know how helpful an allergist would be to you.

Celiac can be kicked in by stress. You can predisposed for Celiac and many times it takes a trigger to set off the symptoms. You certainly do have many of the 200 symptoms.

Hope you get your answers quickly so you can enjoy your wedding.

samiam712 Newbie
samiam712
Posted
  • Author
Hi Samantha,

Welcome here!

If I were in your position, I would require my doctor to run a Celiac Panel. It is a series of four tests. It is not always accurate, but a great place to start. Do not go gluten free prior to testing. If you do have Celiac (with a strong family history) I don't know how helpful an allergist would be to you.

Celiac can be kicked in by stress. You can predisposed for Celiac and many times it takes a trigger to set off the symptoms. You certainly do have many of the 200 symptoms.

Hope you get your answers quickly so you can enjoy your wedding.

Thanks for such a quick response! Yes, I am not sure about the Allergist but my regular doctor hasn't gotten back to me and the last week has been awful. The nurse for the Allergist said he can test for gluten allergies. Do you think he can still order a Celiac Panel? I also wonder if he can order a scope test (where they look at your stomach and intestines).

Lisa Mentor
Lisa
Posted
Thanks for such a quick response! Yes, I am not sure about the Allergist but my regular doctor hasn't gotten back to me and the last week has been awful. The nurse for the Allergist said he can test for gluten allergies. Do you think he can still order a Celiac Panel? I also wonder if he can order a scope test (where they look at your stomach and intestines).

I have never been to an Allergist. I was diagnosedd with Celiac before I even knew what it was. A doctor can order and endoscopy exam performed by a GI.

Many people here have been self-diagnosed and they feel quite cofortable with it. Your other option is to try the diet and see if you have a possitive dietary response. With damage due to celiac, it may take some time for the gut to heal and to show improvement. That in itself is a diagnosis.

Hope I was helpful. Others will check in as well.

gfpaperdoll Rookie
gfpaperdoll
Posted

Here is the story on getting tested:

You can get the blood tests - BUT you will have to print them out from here - there are about 4 or 5 & make SURE that the doc runs them all AND check to see what lab he is sending them to.

If they check for the genes it will only be the celiac ones DQ2 & DQ8.

Then you can get an endoscopy to check for damage...

The above two tests should be done while you are still eating gluten. & the info then will be on your medical records. BUT be aware that there are a lot of false negatives with those tests, sooo....

Now if you do not care if the info is NOT on your medical records you can test thru Enterolab.com, it is done thru a Fed Ex service & takes two weeks. & you do not have to be eating gluten to get this test. You can read about it on their web site. I like them because they check for the celiac genes AND the gluten intolerance genes. Some doctors try to be picky & say that they will not use it for a diagnosis, but really why do we care.

THE final & real diagnosis is if you improve on a gluten free diet. ( & the doctors know this, but they do not tell you...) Sounds like you would. Also sounds like your cousins Crohns is untreated celiac - you might want to clue cousin in...

If I were in your situation, I would quit eating gluten AND dairy, order the enterolab tests - enjoy my wedding & have a great honeymoon eating lobster & shrimp contails

  • 2 months later...
YNGRL Newbie
YNGRL
Posted

I just did the same thing I went to my allergist and he said it was a good idea that I thought of celiac disease because of my symptoms and ran the 4 panel test and its a good thing I went to him because I went to my regular doctor the next day and he said that he thought there were only 2 tests and not 4. Anyhow, Since my allergist is more leaning towards crohn's disease because I had a fistulotomy in 2002 and they never looked any further to see why I had to have one of those at the age of 23 he wants me to get a colonoscopy. I dont know if that is just as good as an endoscopy but My regular doctor had to set the colonoscopy up because thats how referrals are done for my insurance and thats scheduled for december 3rd. They are going to do a biopsy for celiac at the same time. Im really nerve wracked over this because im in the military!! They will probably kick me out! I had them test my stool also. Im to the point where im telling the doctor what to do instead of letting him figure it out. I hope all works out for you and congratulations on your wedding! Please let us know how it went!

CarlaB Enthusiast
CarlaB
Posted

Also check out bacterial dysbiosis and Lyme Disease. They both have similar symptoms to celiac. There are threads on both here in this forum under leaky gut.

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,283
    • Most Online (within 30 mins)
      7,748
    mamakris
    Newest Member
    mamakris
    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

    • numike
      is my celiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my celiac disease gone?

      By Wheatwacked · Posted

      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      is my celiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      is my celiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my celiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
×
×
  • Create New...