Test Results - Help!

[amandanoelle889]

I'll try to keep this short. Here are my results:

TEST: T Transglutaminase IGA | RANGE: 0-15 U/mL | RESULT: 9 U/mL (NEGATIVE)

TEST: T Transglutaminase IGG | RANGE: 0-15 U/mL | RESULT: 3 U/mL (NEGATIVE)

My Current Symptoms:

* Recurring bloating and abdominal pain

* Excessive flatulence

* Lactose Intolerance

* Chronic diarrhea and constipation

* Occasional pale, foul-smelling stool

* Mucus in stool

* Joint pain (I also have mild Scoliosis)

* behavior changes/depression/irritability

* Fatigue, weakness, lack of energy

* Irregular menstrual periods

* Diagnosed with Irritable Bowel Syndrome (IBS)

* Memory loss, anxiety, concentration issues

Disorders in the family:

* IBS (my father and I)

* Type 1 Diabetes (first cousin)

* Eczema (first cousin, brother)

* Peripheral Neuropathy (aunt)

* Osteoporosis (paternal grandmother)

* Wheat Allergy (aunt)

My gastroenterologist is convinced I don't have celiac disease, but I would like to receive a genetic test and/or biopsy to be sure, seeing as most of my symptoms seem to fit so well. Am I being reasonable, or do my tests seem conclusive enough to rule out Celiac? I am already setting up an appointment with an allergist for a full panel to rule out an allergies. I figure if the allergy panel isn't conclusive, I will look back into celiac disease. Does this sound like a good idea? Please help me decipher my results! Is there still a chance I could have celiac disease?

[nora-n]

Hi, the tests are designed to first be positive when there is a lot of intestinal damage.

But people are sick and symptomatic for years before that.

I see you have numbers on the tests, they are not 0, and I think that means something.

Here in europe you would probably get an endoscopy done with such symptoms and history and family history.

[DonaldandAlanda Evans]

A TTG score of anything over a 5 is positive through the mayo clinic. Why not ask for the whole Celiac panel?

[Korwyn]

I have to agree with the previous two posters. I think you should continue pursuing this with your GI. Blood tests are notorious for false negatives. My Dad, myself, and one of my sisters all had one or more negative blood workups prior to diagnosis.

Given your family history and symptoms you are listing many commonly linked symptoms. The only one that isn't in the 'Red Book' as an associated symptom in the mucous in the stool. That would me more characteristic of colitis, which is a secondarily associated condition (due to chronic C&D).

If you don't really care about an official diagnosis and just want to feel better you may want to consider a gluten-free diet on your own.

However there may be some reasons to look at pursuing an official diagnosis (which may involving changing doctors depending on how willing your GI specialist and primary doctor are to work with you). 1) If you have, or are planning to have biological children. celiac disease is hereditary, and untreated celiac disease carries extremely high risk of development of additional auto-immune disorders and some studies have showing highly increase risk of certain skin cancers and and a variety of neurological and central nervous system disorders; 2) If you live in the US, a medial diagnosis of celiac disease does put you into a certain classification as far as reasonable accommodation by your employer for your medical condition if necessary; 3) With a diagnosis, some insurance companies will now cover additional regular testing for various conditions. e.g. More frequent bone-density scans, etc, etc.

If you go gluten-free without a diagnosis, you can still get some genetic testing done (I recommend Enterolab for the genetic test personally) which would at least let you know if you have the genes and how likely you are to pass them on to any children. Also, if you get the genetic testing done first it may help your GI to take it more seriously. My Dad was diagnosed as not having celiac disease at first. After I sent him a copy of my lab results and genetic testing (which showed that I have both of the main genes and got one from each parent) his GI retested him and it came back positive this time.

So there may be a option for you to do that route as well.

[amandanoelle889]

A TTG score of anything over a 5 is positive through the mayo clinic. Why not ask for the whole Celiac panel?

I actually just found that info last night. On the Mayo Clinic website it even said 4.0-10.0 U/mL is considered a weak positive and >10.0 U/mL is considered positive for the IgA. Seeing as my results came back as 9 U/mL, it's definitely convincing me to further pursue Celiac testing. I'll have to try another doctor, though, as my gasteroenterologist won't even consider the possibility of celiac disease anymore! I especially feel he doesn't take me seriously because I am only 18. Luckily, my mother is pretty committed to going the lengths necessary to finding a solution, and I already know of some other gasterenterologists through my brother, who was diagnosed with a rare presentation of Wilson's Disease a couple years back.

[amandanoelle889]

A TTG score of anything over a 5 is positive through the mayo clinic. Why not ask for the whole Celiac panel?

I'll have to go through another doctor, as mine is convinced I'm fine and that I just have "IBS." I figure I'll see how my full allergy panel comes back, and if my problems don't change after altering my eating habits based on those results, I'll find another doctor who will test me.

[amandanoelle889]

I have to agree with the previous two posters. I think you should continue pursuing this with your GI. Blood tests are notorious for false negatives. My Dad, myself, and one of my sisters all had one or more negative blood workups prior to diagnosis.

Given your family history and symptoms you are listing many commonly linked symptoms. The only one that isn't in the 'Red Book' as an associated symptom in the mucous in the stool. That would me more characteristic of colitis, which is a secondarily associated condition (due to chronic C&D).

If you don't really care about an official diagnosis and just want to feel better you may want to consider a gluten-free diet on your own.

However there may be some reasons to look at pursuing an official diagnosis (which may involving changing doctors depending on how willing your GI specialist and primary doctor are to work with you). 1) If you have, or are planning to have biological children. celiac disease is hereditary, and untreated celiac disease carries extremely high risk of development of additional auto-immune disorders and some studies have showing highly increase risk of certain skin cancers and and a variety of neurological and central nervous system disorders; 2) If you live in the US, a medial diagnosis of celiac disease does put you into a certain classification as far as reasonable accommodation by your employer for your medical condition if necessary; 3) With a diagnosis, some insurance companies will now cover additional regular testing for various conditions. e.g. More frequent bone-density scans, etc, etc.

If you go gluten-free without a diagnosis, you can still get some genetic testing done (I recommend Enterolab for the genetic test personally) which would at least let you know if you have the genes and how likely you are to pass them on to any children. Also, if you get the genetic testing done first it may help your GI to take it more seriously. My Dad was diagnosed as not having celiac disease at first. After I sent him a copy of my lab results and genetic testing (which showed that I have both of the main genes and got one from each parent) his GI retested him and it came back positive this time.

So there may be a option for you to do that route as well.

Unfortunately, I need to have an actual diagnosis. I will be living on-campus in a university next fall, and I will need to know if I have to contact their disabilities department to see if I am eligible for a dorm with a kitchen. The school is a public university with little gluten-free options in their cafeteria, and if I end up having celiac disease, my own kitchen would be vital. However, disabilities won't consider it a problem if I have no definitive diagnosis. Consequently, I plan to find another doctor who will further test me once I finish my allergy panel.

[DVjorge]

Unfortunately, I need to have an actual diagnosis. I will be living on-campus in a university next fall, and I will need to know if I have to contact their disabilities department to see if I am eligible for a dorm with a kitchen. The school is a public university with little gluten-free options in their cafeteria, and if I end up having celiac disease, my own kitchen would be vital. However, disabilities won't consider it a problem if I have no definitive diagnosis. Consequently, I plan to find another doctor who will further test me once I finish my allergy panel.

The other thing that can cause all the symptoms you have is candida. Candida Related Complex share almost the same symptoms that Celiac or Gluten intolerance and is very common. I will look seriously to it. Intestinal candidiasis is probably the biggest culprit.