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Possible Celiac Disease?


samiam712

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samiam712 Newbie

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


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Lisa Mentor
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
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
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

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

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

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.


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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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