Anyones Advice. Input From Celiacs, Intolerants, People With My Issues..anyone!

[runningcrazy]

Hi, im new here!

for the record I AM eating gluten now, I have been since April

I've been having many problems with my stomach. Constipation,stomach ache after each time i eat, bloating , and I lost some weight.

I am a 13 year old girl, 5'4 and right now I weigh about 94lbs.

In around February I weighed 81lbs, which means I lost about 12 lbs in the last 6 months. I was also experiencing pretty bad constipation despite my daily running and vegetarian/high fiber diet and loads of water. Me and my mom figured we would give a gluten free diet a try.

I went gluten free for 20 days. In that time I gained about 8lbs. I was feeling better at first, but my stomach aches were still there. I ended up going to a pediatrician to get a blood test to ensure it was celiacs. She said that even thoigh I hadnt eaten gluten, the blood test would still be accurate. It came back negative. I was given a prescription for Miralax and at my follow up appointment I was told to eat gluten again and was prescribed dulcolax along with miralax.

I've been eating gluten since half way through april and I have gained about 6 lbs still, so that might mean its not gluten problem? And since i had been eating it two months i got another blood test which came back negative again.

My first blood test from April is a bit confusing to us. I had a CBC in April and just a celiac test in June. Here are my celiac results in comparison from not eating to eating it:

April(no gluten): Tissue Transglutaminade AB IGA: 0.8 (ref range: 0.0-3.9)

IgA: 236 (ref range 80-450)

Other things to note were low iron, high lymphocytes(about 5 above the highest for "normal") Low White blood count, and low glucose.

June result: Tissue Transglutaminase Ab IGA: 0.9 (ref range-0.0-3.9)

IgA: 189 (ref range- 80-450)

So from no gluten to eating it my Transglutaminase went up SLIGHTLY and my IgA went down a bit. They still all were in the range of normal.

Still have stomach aches, still am severely constipated(according to multiple xrays) still am bloated all the time, and as prescribed by my pediatrician I take 2 doses of miralax, 2 colace, and 2 dulcolax daily. For about 2 months now. Miralax longer.

I will see a gastroenteroligist sometime hopefully this month but i just want some input from celiacs or intolerants. Does this sound like a celiac/intolerant case?

Im very confused. My pediatrician said i may get an endoscopy and if all is normal possibly IBS, but ive heard over half the time IBS is really celiacs!

Any iput would be great, sorry for such a long story!!

[Becci]

If you have already cut out gluten, have you thought about trying to cut out something else to see if that is a problem as well?

I had to cut out both gluten and dairy. Since then, I am fine...

Another problem you could be having is accidentally getting into gluten without knowing it.

Have you checked your soaps, shampoos, makeup, etc?

And do you check ingredients in foods before eating them? You could be getting glutened and not know it.

And as for not eating gluten and your test still being accurate as to you having Celiac, that is not true. As far as I know, once you stop eating gluten, your tests will come back negative, because it is no longer in your system. Once you go Gluten-Free, your tests will most likely be negative as there is no gluten in your system.

Have you checked the ingredients in the meds they are giving you?

[debmidge]

Hi, im new here!

I've been having many problems with my stomach. Constipation,stomach ache after each time i eat, bloating , and I lost some weight.

I am a 13 year old girl, 5'4 and right now I weigh about 94lbs.

In around February I weighed 81lbs, which means I lost about 12 lbs in the last 6 months. I was also experiencing pretty bad constipation despite my daily running and vegetarian/high fiber diet and loads of water. Me and my mom figured we would give a gluten free diet a try.

I went gluten free for 20 days. In that time I gained about 8lbs. I was feeling better at first, but my stomach aches were still there. I ended up going to a pediatrician to get a blood test to ensure it was celiacs. She said that even thoigh I hadnt eaten gluten, the blood test would still be accurate. It came back negative. I was given a prescription for Miralax and at my follow up appointment I was told to eat gluten again and was prescribed dulcolax along with miralax.

I've been eating gluten since half way through april and I have gained about 6 lbs still, so that might mean its not gluten problem? And since i had been eating it two months i got another blood test which came back negative again.

My first blood test from April is a bit confusing to us. I had a CBC in April and just a celiac test in June. Here are my celiac results in comparison from not eating to eating it:

April(no gluten): Tissue Transglutaminade AB IGA: 0.8 (ref range: 0.0-3.9)

IgA: 236 (ref range 80-450)

Other things to note were low iron, high lymphocytes(about 5 above the highest for "normal") Low White blood count, and low glucose.

June result: Tissue Transglutaminase Ab IGA: 0.9 (ref range-0.0-3.9)

IgA: 189 (ref range- 80-450)

So from no gluten to eating it my Transglutaminase went up SLIGHTLY and my IgA went down a bit. They still all were in the range of normal.

Still have stomach aches, still am severely constipated(according to multiple xrays) still am bloated all the time, and as prescribed by my pediatrician I take 2 doses of miralax, 2 colace, and 2 dulcolax daily. For about 2 months now. Miralax longer.

I will see a gastroenteroligist sometime hopefully this month but i just want some input from celiacs or intolerants. Does this sound like a celiac/intolerant case?

Im very confused. My pediatrician said i may get an endoscopy and if all is normal possibly IBS, but ive heard over half the time IBS is really celiacs!

Any iput would be great, sorry for such a long story!!

Hi Glad to see a new face

Were you tested for lactose intolerance?

DM

[runningcrazy]

I have been eating gluten for almost 3 months. I haven't been gluten free since April. My doctor said since I don't have diarhea or other lactose intolerant symptoms that it's not dairy.

[Becci]

If your eating gluten after going gluten-free, then that is probably your problem with the pains.

I went gluten free and then ate some on accident, and now I am having horrible stomach pains that have to do with eating gluten.

Stop eating it and see if it goes away. It may take a few days.

[nora-n]

It could be early celiac. Also, your numbers are not 0.

My weight used to go UP and up, and after a while off gluten by accident (Went low-carb) and then noticing I got sick from gluten, and a gluten challenge for five weeks (too short) my weight started to drop all by itself.

If you read around here on celiac.com, in the articles, about obesity, it looks like many obese people are celiac, but only partially. The tests are very inaccurate in partial villi damage.

And in partial villi damage, there is a huge problem with absorbing fatty acids and the whole metabolism goes to starvation mode and grabs as much energy from food as possible. Thence the weight gain.

It is hard to get a diagnosis in early celiac, or with partial villous damage.

maybe an endoscopy with biopties will show increased intraepitelial lymphocytes, if they bother to count them. They did not count mine.

See www.thefooddoc.com and look for his blog there and he explains about the IEL's.

nora

[Lawspike]

Hi Glad to see a new face

Were you tested for lactose intolerance?

DM

Sorry to hijack this thread.. LOL

Deb, I am a new member and do not yet have enough posts to message you. I noticed that your husband can't tolerate many of the additional things I can't. The dietitians in my state we currently live in (TN) are almost completely UNFAMILIAR with Celiac, and I can't consume (besides wheat), casein, (lactose as well) soy, eggs, honey and coconut (discovered due to a really bad reaction I just had during my elimination process).

I would LOVE to chat with you about what exactly your husband DOES and can eat... I was JUST diagnosed on 7/13/09 and am overwhelmed, frustrated and feel like a sinking ship... I too have been misdiagnosed for almost all of my 35 years on earth, and I too, have suffered every other imaginable condition and ailment, which I believe could have been avoided with a proper diagnosis.

THANKS a MILLION!

As to Nora,

There may be other issues going on as well, I would - if it were me - go through with the biopsy. They test for additional disorders, in addition to Celiac, and this may be the puzzle piece that solves what you are going through! Whatever your decision, I sincerely hope you start feeling better and get to the bottom of this!