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Could I Have Cd?

rohit77

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rohit77 Newbie
rohit77
Posted

Hi,

My doctor thinks I may have celiac and has scheduled me in for an endoscopy. The test is still two months away, and i'm quite anxious to know "whats wrong with me".

I had a blood test 2 months ago. The tests showed that i was not anemic, had normal sodium, postassium, glucose levels, etc. But i had a slightly lower than normal WBC count, and a high level of cholesterol.

Some other symptoms i have are, underweight (i'm 5'10 and only weight 117pounds), headaches, tiredness, low motivation, frequent stomach aches, alternating diarehha and constipation...

I find it odd that i could have celiac without being anemic. I'm curious to know what your thoughts are.

thnx

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KaitiUSA Enthusiast
KaitiUSA
Posted

You don't have to be anemic to have celiac. Many people are not anemic..I know I was not.

Your symptoms do sound like celiac-alot of them sound like me.Fatigue is actually the most common symptom. Its hard to tell from symptoms alone though because some to not get symptoms and there are over 200 symptoms associated with celiac and everyone has different ones.

Did you get a celiac blood panel done? Thats what they should do before an endoscopy. Blood tests these days are getting very accurate so I'm sure you would be able to get answers. Also, 2 months for an endoscopy is way to long! I would definitely get blood tests because you will know within like a week

rohit77 Newbie
rohit77
Posted
  • Author

Hi Kaiti,

Thanks for your reply.

I went for a blood test this past saturday but my family doctor forgot to write the celiac panel on the requisition form. I couldn't tell it was missing because his writing is like chicken-scratch :) (I ended up only getting a cbc, and cholestoral tests). When i go for my results, i'll ask him again. Rather find out sooner than later.

Yeah, it's a brutal wait for the endoscopy. I would have had it next month, but i'm out of town so i had to reschedule it. I can't wait to get my "problem" diagnosed as its really draining alot out of me.

When you went gluten-free, how soon did you start to feel better?

julie5914 Contributor
julie5914
Posted

Yeah, I was anemic but not underweight at all - I had gained actually, not sure if it was related though.

I started feeling better digestive wise within a few days to a week. It has been a month now, and I continue to feel better and better, but it was just such a big thing to have the digestive problems start going away.

KaitiUSA Enthusiast
KaitiUSA
Posted
When you went gluten-free, how soon did you start to feel better?

<{POST_SNAPBACK}>

I did not feel alot better until the 3rd month. By the 8th month I was back to normal again though. It varies from person to person depending on damage, age, and so forth.

Carriefaith Enthusiast
Carriefaith
Posted
Some other symptoms i have are, underweight (i'm 5'10 and only weight 117pounds), headaches, tiredness, low motivation, frequent stomach aches, alternating diarehha and constipation...
Those symptoms do sound like celiac symptoms. I didn't have anemia when I was at my worst, but I had a ton of other symptoms. And I also had to wait forever for a biopsy <_< I had a positve blood test but my doctors wanted to do a biopsy. While I was waiting, I ate all the gluten I could... ;)

Some of my symptoms cleared up within 6 months (like weight loss, hair loss, joint pain, brain fog, extreme fatigue), but it took about 1 year for me to feel about 90% better. I'm still not myself, but I am so much better than I was.

rohit77 Newbie
rohit77
Posted
  • Author

Thanks for all your comments. I'm seeing my doctor tommorow so i'll be asking him for the celiac blood test.

Oh one last thing... Have any of you ever tried any chinese herbal remedies? I've gotten one called "stomach tonic" (not sure for its real name), However it has been doing wonders for my stomach. I take 2 tiny round pills 30min after eating a big meal. I now no longer have stomach aches as often, and my bowels move alot more nicer now...

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melhopkins02 Rookie
melhopkins02
Posted
Thanks for all your comments. I'm seeing my doctor tommorow so i'll be asking him for the celiac blood test.

Oh one last thing... Have any of you ever tried any chinese herbal remedies? I've gotten one called "stomach  tonic" (not sure for its real name), However it has been doing wonders for my stomach. I take 2 tiny round pills 30min after eating a big meal. I now no longer have stomach aches as often, and my bowels move alot more nicer now...

<{POST_SNAPBACK}>

Its amazing how close your symptoms are to mine. I have been suffering with migraines, stomach problems, tiredness (extreme), body aches, bad colesterol, and even a low WBC. I also later found out that I had a B-12 deficientcy. I was later sent to a internal doctor and he finally found what i had. I have only been on a gluten-free diet since Monday (July 18th because I was diagnosed on the thurs. before.) I gave myself through the weekend then began my diet. I still have a senstitive stomach...eat things without gluten and some things still bother me but its def. better not eating gluten. I know it will take time to heal so Im sure the little problems with the gluten-free food will go away. I might be lactose int. but haven't heard that yet. As far as not having all the "typical" symptoms, (if you want to call that since there really are typ,.symptoms) I was unsure for so long because of that. The B-12 did get the doctors thinking though. I went to all different doctors until I finally got on the right path. A quesiton for several of you, I had a breath test done and I haven't heard anyone on here talk about that as a way of finding out if you may have celiac disease. That was the first test that the doc. did and then we approached the biopsy. Anyway, just wondering....but for you, I really hope things turn out well with the doctor. Maybe its not Celiac but if it is, its amazing how much you will learn on here and its not the end of things...I am slowly realizing how healthy I am eatting and how much better (slowly) I am beginning to feel.

Good luck!!

melhopkins02 Rookie
melhopkins02
Posted
Its amazing how close your symptoms are to mine.  I have been suffering with migraines, stomach problems, tiredness (extreme), body aches, bad colesterol, and even a low WBC.  I also later found out that I had a B-12 deficientcy.  I was later sent to a internal doctor and he finally found what i had. I have only been on a gluten-free diet since Monday (July 18th because I was diagnosed on the thurs. before.) I gave myself through the weekend then began my diet.  I still have a senstitive stomach...eat things without gluten and some things still bother me but its def. better not eating gluten.  I know it will take time to heal so Im sure the little problems with the gluten-free food will go away.  I might be lactose int. but haven't heard that yet.  As far as not having all the "typical" symptoms, (if you want to call that since there really aren't typ,.symptoms) I was unsure for so long because of that.  The B-12 did get the doctors thinking though.  I went to all different doctors until I finally got on the right path.  A quesiton for several of you, I had a breath test done and I haven't heard anyone on here talk about that as a way of finding out if you may have celiac disease.  That was the first test that the doc. did and then we approached the biopsy.  Anyway, just wondering....but for you, I really hope things turn out well with the doctor.  Maybe its not Celiac but if it is, its amazing how much you will learn on here and its not the end of things...I am slowly realizing how healthy I am eatting and how much better (slowly) I am beginning to feel.

Good luck!!

<{POST_SNAPBACK}>

  • 2 weeks later...
rohit77 Newbie
rohit77
Posted
  • Author

Hi,

So I finally got my results back from the doctor today. Turns out the lab only ran one test. Here are the results:

------------------

IgA Anti-Tissue Transglutaminase

Reference Range: < 20 units

My result: < 2

Description: Negative. Celiac disease is unlikely. Note: False negative results may occur in celiac disease patients who are on a gluten free diet or who have low or absent IgA levels.

-----------------

Well, I dont know what to make of it, but my doctor said that I should still go for the biopsy which is at the end of Sept.

Urgh.. The search for the problem continues :)

KaitiUSA Enthusiast
KaitiUSA
Posted

First, you still could have a problem with gluten even if its not celiac.

The tTG is a very accurate test but it also is aimed at detecting damage in the intestines(and will be taking place of a biopsy in at least kids soon). If you do not have damage yet then it is possible to have a false negative.

I hope you are able to find some answers soon.

Merika Contributor
Merika
Posted

Rohit,

Sorry you have to wait so long for the biopsy. :( It is possible to be celiac and not anemic - I was celiac for 12 years undiagnosed, skinny, and even while pregnant I was not anemic (and many otherwise healthy women are then).

As for chinese meds, I love them and take them. HOWEVER, should you go gluten-free, know that many of them are not gluten-free, especially pre-prepared ones. Often pills are bound with wheat flour. Also, the little herb packets dispensed by a TCM doc to be made at home for medicinal tea are often cut with wheat (typicall the "bitter" ones, but there's no way to tell for sure). If you get pure raw herbs you can make your own teas that are probably gluten-free. This is what I do now (or my doc makes them).

Even though the packaging lists the ingredients, items from Asia and India do not really list ALL their ingredients.

Merika

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      Son's legs shaking

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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
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      By trents · Posted

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