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

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

  • 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. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    2. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    4. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748
    Travis25
    Newest Member
    Travis25
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.