Is It Celiacs Or Gluten Intolerance?

[SOUPS]

For the past 5 years I have basically lost my ability to enjoy life. When I first became ill, I had no idea that it could be related to the food I was consuming.

After about 1 year of chronic constipation with frequent use of laxatives, itchy skin, muscle and joint pain, sensitivity to sound and light, depression, brain fog, dizziness/vertigo, loss of sex drive, some blurriness of vision, extremely foul smelling gas, and blotchy red bumps on my left arm that seem to get worse during one of my "episodes", and all of which are relieved upon using a suppository laxative and having a bowel movement, I ran into someone who has Celiac Disease. They explained it to me and I have been off and on the diet ever since, without any diagnosis from blood tests.

I am currently awaiting more blood results and the decision of an appeal with my insurance company (they won't allow me to get an Upper GI/Biopsy of my small intestine)... I did however test positive to 1 out of the 2 genes on the gene blood test, and have had two negative blood tests for gluten but am awaiting my third go around.

My thyroid levels are off, so I am currently on medication but was on synthroid in the past with no relief of symptoms, other than my weight went down about 20 lbs. I went off the medication, weight went up, now on a different type of thyroid med (Levosint) and have another test in about 3 weeks to test TSH.

So from your experience, looking at my symptoms, could it be Celiac disease or a gluten intolerance mixed with a thyroid condition?

Also, these symptoms have slowly worsened over time, starting with only constipation, then adding each other symptom slowly over the 5 years... What may have began as a thyroid condition has now ruined my life.

I am a long distance competitive runner, my mileage is suffering, my body weight has gone up, I am unable to recover after working out, I feel tired and sick all the time, it's putting a strain on my job, my marriage, my friendships, my family...

Need help.

Thank you for your time.

[Marlie]

Did they run a full Celiac Panel? There are five tests in it. Its something to keep in mind because many people have posted results that are not a full Celiac Panel. Did you ever get relief from being 100% Gluten Free and check everything you eat as that can make a difference?

[SOUPS]

Did they run a full Celiac Panel? There are five tests in it. Its something to keep in mind because many people have posted results that are not a full Celiac Panel. Did you ever get relief from being 100% Gluten Free and check everything you eat as that can make a difference?

I honestly am not not about whether or not it is the "full panel" or not, I will inquire on Wednesday's appointment.

I have yet to feel better but I have yet to be gluten free for a long period of time because everytime I go to a new doctor, they want me to eat gluten for weeks at a time before being tested. My current doctor has been the first to give me the gene test and he has been the 10th doctor I have seen since this all began.

[zeta-lilly]

Yes, your symptoms are definitely consistent with gluten intolerance/celiac disease. Do the testing, but then try the diet regardless of what the tests say (but wait until you're done with testing). There are TONS of people on here who tested negative time and time again before they either tried the diet with success or finally had a positive test. So it's better to cover all your bases with a gluten free trial.

So from your experience, looking at my symptoms, could it be Celiac disease or a gluten intolerance mixed with a thyroid condition?

Thyroid disease is very commonly caused by gluten intolerance, and my thyroid labs actually improved after I went gluten free, so that could be caused by the antibodies from the glutne.

And this is my own soapbox and is irrelevant but personally, I'm a nurse and I don't really understand why physicians care about distinguishing between celiac disease and non-celiac gluten intolerance. The cause is the same, the treatment is the same, and there are so many body systems affected by both conditions that intestinal damage just seems like an arbitrary place to draw the line. To me, a disease which causes system-wide damage including the intestines is the same disease as one which causes system-wide damage but doesn't damage the intestines.

Hope this helps :-)

[SOUPS]

Thank you for the reply, it was very informative. I have an appt. tomorrow to see the results of the blood test, I will have to get a copy of my gene and tomorrows blood test results so that I can examine them and post further information. I have a feeling my insurance may continue to deny the Upper GI and biopsy because I had an Upper GI done 2 years ago without a biopsy and they said that I can't get another for 5 years but I appealed the decision based on the biopsy not being done the prior time. Either way, I have already began the gluten free diet, I am now 2 days into being what I believe to be gluten-free. I had an episode today but am not sure if it was from artificial sweetner, caffeine, or an additional delayed reaction from gluten. My chest began hurting, severe stomach cramping, and very intense body pains, like all my bones felt like they were about to snap. I immediately took a benadryl and 2 Tylenol and feel somewhat better. I didn't have the usual "glutened" feeling, this was somewhat different which leads me to believe that I am also now suffering from a caffeine or artificial sweetner sensitivity or allergy; thoughts?

[SOUPS]

Went to Gastro doc today and recieved the following results:

HLA-DQ2 - Negative

HLA-DQ8 - Positive

HLA-DQA1 - 03

HLA-DQB1 - 0301

HLA-DQBQ - 0302

ANTI-GLIADIN IGA

GLIADIN AB IGA - 13 (OUT OR RANGE - EQUIVOCAL)

GLIADIN AB IGG - 12 (OUT OF RANGE - EQUIVOCAL)

TISSUE TRANSGLUTAMINASE AB IGA

AB, IGA - 3 (NEGATIVE)

TSH - 4.48 (HAVE BEEN ON TIROSINT FOR 1 WEEK, TESTING AGAIN IN 3 WEEKS)

[SOUPS]

Any input?

[Skylark]

You have a "celiac" gene and borderline anti-gliadin. Developing celiac disease is a process. If you want an educated guess, I'd say you're partway there. Your villi may look OK but going off gluten is a really good idea and you will probably feel much better.

[Marlie]

The reason why I stated a full Celiac Panel is because my child on her first Celiac Panel only tested for tTG and EMA which were both negative. However two months later a full Celiac Panel was given and with that both DGP tests and they were positive and her Total IgA was on the low side of normal. If it wasn't for the full Celiac Panel we would not have realized she had Celiac.

[SOUPS]

The reason why I stated a full Celiac Panel is because my child on her first Celiac Panel only tested for tTG and EMA which were both negative. However two months later a full Celiac Panel was given and with that both DGP tests and they were positive and her Total IgA was on the low side of normal. If it wasn't for the full Celiac Panel we would not have realized she had Celiac.

So this wasn't the full panel then?

[Marlie]

The initial test done was only tTG Iga and EMA IgA which were both negative. To be honest I didn't even know they did it but the doc was looking for autoimmune diseases. Two months later she got really sick and by sheer luck the hospital ordered a celaic panel but never told me. I got a phone call a few weeks later stating she had positive labs for celiac. The panel they did at hospital was sent to promytheus labs in california and included the two tests above and a total serum IgA and the DGP IgA and DGP IgG. Only the two dgp labs were positive.

[SOUPS]

I'm just going to go gluten-free for awhile and see what happens. I guess celiac is very common with thyroid problems. I also cannot tolerate caffeine anymore, not sure if it's because my stomach is in so much distress from gluten or if it's something completely aside from it.

[jlee2]

I truly feel for you. I also had borderline bloodwork (10 years ago now) and inconclusive blood test results. I think it's extremely unfair that they did not biopsy you. I work in histopathology ( we are the ones who get all the biopsy results and study each one under the microscope ) and if any of our docs do a scope they biopsy no matter what. Even if it looks totally normal. I also feel so bad for you regarding your insurance. It's things like that that make me so grateful for my healthcare in Canada. There was 4 years in a row where I had a scope and colonoscopy done yearly and never paid a cent. If I was you I would fight fight fight your insurance company. In this world you have to be your own advocate. I'm sure if the head honcho of your insurance company spent one day with your symptoms he would change his mind. Best of luck to you and if all else fails just do a gluten-free diet yourself!!!

[SOUPS]

Thank you for your kind words and I also hope and pray for a solution to my problems. I am 4 days gluten-free now, so I'll continue to be gluten-free until I hear from my insurance appeal. I am only in week 2 of my thyroid medication, so we'll see what happens with both as time passes. Some days I feel completely motivated and inspired and others I feel completely depressed and hopeless; I just try to remind myself that it won't be like this forever, it can't be. Although my energy right now is extremely low, I continue to push myself through my workouts and runs, in hopes that its better for me to keep up a healthy level of exercise. I rest on the days that I feel like I cannot do anything and do what I can on the days that I feel okay. Something will break soon, a diagnosis or me... hoping its not me first.