Confused & Desperate-- Help With Diagnosis Pls

[siligurl]

Long and short of it, I have a lot of the symptoms of Celiac's and a lot of the related health problems that Celiac's could cause. My labs were:

TISSUE TRANSGLUTAMINSE AB IGA < 3

GLIADIN AB IGA < 3

IGA 77

(At the time, I was dieting so might have been getting some gluten products, but might not have)

My labs throughout the past few years also indicate some liver damage w/ possible iron overload disorder, I had my gallbladder removed without any family history of gallbladder disease, I have hypothyroidism that is not being treated properly, vitamin D deficiency, and borderling magnesium deficiency. I feel like I have chronic fatigue syndrome and have early onset of thoracic disc degeneration and cervical stenosis. I am allergic to whole eggs and once i took that seriously and omitted them from my diet, I can immediately tell the difference when they sneak into my diet.

SO. I am leaving my family temporarily due to a military move and can truly stock the house with only "healthy" things for me... My question is whether you suspect Celiac's since my doctor doesn't despite the related disorders that I have/may have. I don't want to be on a gluten free diet as it is so restrictive if there is no need... but I equally would like to be without the constant pain and fatigue I'm dealing with.

Your thoughts????

Jennifer

[Mother of Jibril]

Can you post the ranges for your total IgA? It looks to me like you're IgA deficient... and if that's the case, you could be half-dead and still get a "negative" result on a celiac panel.

If you are IgA deficient, you have a few options:

1) Get a genetic test

2) Have an endoscopy to check for damaged villi

3) Go on the gluten-free diet... no need to have an official diagnosis if you're the kind of person who can live a healthy lifestyle without it (assuming you feel better on the gluten-free diet)

[siligurl]

Can you post the ranges for your total IgA? It looks to me like you're IgA deficient... and if that's the case, you could be half-dead and still get a "negative" result on a celiac panel.

If you are IgA deficient, you have a few options:

1) Get a genetic test

2) Have an endoscopy to check for damaged villi

3) Go on the gluten-free diet... no need to have an official diagnosis if you're the kind of person who can live a healthy lifestyle without it (assuming you feel better on the gluten-free diet)

Mother, thanks for answering! The ref range for the IgA began at 80 (80 -153???). I should have also mentioned that I have hypothyroidism and Hashimoto's although why the docs don't want to actually diagnose me with Hashi's I don't even know-- not complaining as my VA disability, when I get out, will be less with that official diagnosis. The AF won't do the genetic test... and having had a liver biopsy, am not so gung ho about the endoscopy. I think I'm going to try gluten free since it'll be "easier" without my family, but am kinda dreading the prospect. Have to admit, though, that certain items (yeast rolls, wheat bread, and plain bagels) totally cause tummy upset (nausea, cramps) so there is something there I suspect.

Thank you!... Is gluten sensitivity the same as celiacs?

Cheers, Jennifer

[GFinDC]

Hi Jennifer,

Gluten sensitivity is not the same as celiac. There is plenty of room for damage to other body parts besides your gut though. Just because your gut isn't being obviously damaged, doesn't mean your joints, brain, nerves etc are out of harm's way.

If you have Hashi's symptoms, it would be worthwhile getting some treatment. My doc hasn't been willing to treat me either, and insists my TSH levels are fine. I got some Natural Sources Raw Thyroid at the Vitamin Shoppe instead. It makes quite a difference for me, taking one every other day. You also might want to cut down on goitrogneic foods, or eat them only every other day. They inhibit the thyroid's absorption of iodine. Soy is a bad one. Wiki has a list of goitrogenic foods.

[Pac]

Hi Jennifer,

look up 'gluten sensitivity' article on wikipedia. It's a good reading for anyone with celiac and other gluten sensitivities. I think someone added it recently, or at least rewritten it.

As for the gluten-free diet, if you think it's too restrictive when compared to your eating habits, maybe you should try get the proper diagnosis first, just to avoid the "what if it isn't gluten" doubts later. Just MHO.

Pavla

[Mother of Jibril]

Mother, thanks for answering! The ref range for the IgA began at 80 (80 -153???). I should have also mentioned that I have hypothyroidism and Hashimoto's although why the docs don't want to actually diagnose me with Hashi's I don't even know-- not complaining as my VA disability, when I get out, will be less with that official diagnosis. The AF won't do the genetic test... and having had a liver biopsy, am not so gung ho about the endoscopy. I think I'm going to try gluten free since it'll be "easier" without my family, but am kinda dreading the prospect. Have to admit, though, that certain items (yeast rolls, wheat bread, and plain bagels) totally cause tummy upset (nausea, cramps) so there is something there I suspect.

Thank you!... Is gluten sensitivity the same as celiacs?

Cheers, Jennifer

Hi Jennifer!

Doctors can be kind of weird about thyroid disorders. Unless you had treatment for Graves disease or were born without a thyroid or had surgery to remove it... you can pretty much assume that you have Hashimoto's. It's the most common cause of hypothyroidism in adults. I couldn't even get an appointment with an endocrinologist until I had an ultrasound that showed a slight goiter (good thing my PCP was willing to arrange the ultrasound ). Unfortunately, you just need to be persistent and keep looking for a doctor who's willing to work with you. If you have a lot of symptoms (dry skin, depression, constipation, feeling cold all the time, etc...) the right dose of medication might really help. (I wouldn't count on it to solve all your problems, but it's a step in the right direction).

You're definitely IgA deficient, so I wouldn't worry about the blood test. If you're going to skip the endoscopy (which is fine) you might want to do the genetic test. You can order it yourself through a site like Enterolab or Prometheus and your insurance company will never have to know. Post the results here if you go that route! There are plenty of people who can help you interpret them.

[siligurl]

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