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Glutin-Free Man

Member Since 12 Jan 2009
Offline Last Active Dec 20 2012 04:47 AM
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#752579 Calling Expert Celiacs!

Posted by Glutin-Free Man on 01 December 2011 - 08:19 AM

I can't even express how angry I am after seeing this immunologist! I really am at breaking point with doctors! Cab anyone figure out these recent blood results for me please?
IgG- 11.94 (6.0-16.0)
IgA- 3.4 (0.8-2.8)
IgM - 1.05 (0.5-1.9)
ANA Anti nuclear Antibody- Hep 2 Positive homogeneous

I went to see this immunologist thinking that my endo might have ordered me celiac tests and it look like he hasn't done the relevant ones needed. So I'm no closer to a diagnosis and have no clue as to whats wrong with me again!

The dr said not to worry about the out of range results as 'some people are like that'! when I said well I don't feel well so obviously theres something wrong he just smirked at me and said 'there's nothing wrong with you, you might have had a virus'

Anyone any ideas?

Have I even had the right tests for celiac? or should I just go back on the bread and forget about all of this! sorry just so wound up about all this!

Hi Katie,

Sorry to hear you're having so much trouble. I don't know whether this will help you, but here's my story:

I had no problems that I noticed until I got close to 40, then I started noticing that I didn't feel well.

I couldn't even define what felt wrong, so I didn't see a doctor for it at first. Over time, I noticed that my periods of not feeling well coincided with the food I ate. If I had a bagel for breakfast, I'd feel dizzy, nauseous, and out of sorts for an hour or two, then feel more normal again.
I thought maybe I had some early symptoms of diabetes, as my father has Type II, so I saw the doctor, mentioned my worries, and had some blood tests done. I showed up as normal for all the tests that were performed.

At this time, my chest pain started to worry me. My cholesterol was high, so my doctor prescribed a simvastatin to reduce it. At one point, I ended up checking myself into the ER for chest pains + heart palpitations. They put me on a heart monitor for an hour or so, then sent me home. That episode prompted a stress test (running on a treadmill) and sonogram. The nurses afterward commented that I was one of the healthiest people they'd seen in a long time. No problems were discovered.

I kept feeling ill, and started keeping a food diary. My AHA! moment occurred one evening when my wife was out and I was watching the kids alone (3 & 5 at the time, so needing a fair amount of concentration). We had spaghetti for dinner, and I felt really woozy afterwards. I was dizzy and nauseous - much like having had 3-4 beers, but without the good feelings associated with that. I'd had no alcohol. It was pretty scary, considering I was alone with two small children.

I noticed then that all my episodes appeared to correlate to wheat products.

I called my family physician the next day, and told her I thought I might have a gluten problem. She told me to try eliminating it from my diet, and see whether I felt better. (btw: That's probably considered bad advice by many, as it will influence the blood tests - I considered it so for a while, but now I'm not sure any more.) I eliminated gluten for my diet for a week, and felt better than I had in a long time. I told my doctor, and she sent me to a GI specialist. It took 2-3 weeks to get an appointment with him, and I felt better on the gluten-free diet, so I kept it up. When I saw him he asked about my symptoms. At the time I was experiencing severe stomach pain, nearly constant gas, early satiety (I'd eat less than 1/3 of a normal portion at dinner, then feel so full I was unable to eat anything else), chest pains, blurry/double vision, and the aforementioned dizziness/nausea when I was eating gluten. I'd also lost about 30 lbs. in the previous month or so.

The specialist completely ignored my neurological symptoms (dizziness, blurry/double vision), concentrated on the GI symptoms (stomach pain, gas, early satiety), and dismissed the chest pains as GERD.

He put me on high strength antacids (Prilosec) and scheduled an endoscopy and blood tests. I mentioned that I'd been on the gluten-free diet for almost a month, and that according to what I'd read, that would affect the blood tests. We agreed that I'd eat gluten again for a week, then have the tests, although he didn't seem to think it was necessary.

I ate gluten again for a week, then had the tests done. The endoscopy turned up negative for Celiac, but did show some damage and a partially healing ulcer (thus the severe stomach pain). The blood tests returned negative. I told him the Prilosec was not making a difference, and he upgraded it to Nexium (newer version). I took 3 doses of the Nexium, decided it was making me feel WORSE, not better, and quit it.

When I mentioned that to the specialist he was at a loss, and ordered a PH test (http://heartburn.abo...rn/a/phtest.htm) this would involve a tube stuck down my throat for 24 hours so he could monitor the PH balance of my stomach acid over time.

By this time I was starting to feel better, and was personally convinced that gluten was the issue, even though all of the tests he'd performed came back negative. I ended up refusing the PH test, on the grounds that it was pretty invasive, and that I was already feeling better from the gluten-free diet.

I never went back to his office.

I've never been formally diagnosed with any problem.

This all happened about 3 years ago. At the time I was convinced I had cancer or worse, and was probably dying (I do have a family history, and lost a brother to Leukemia when I was in HS). Today, most days I feel normal, although following the diet is a big PITA. When I don't follow it, I have near constant diarrhea, joint pain, heart palpitations, dizziness/nausea, stomach pain, severe tiredness, and probably other symptoms I'm forgetting.

Last year, we noticed my son appeared not to feel well. He just turned 6 a week ago, so he was probably about 4 1/2 at the time. He used to be the happiest kid you've ever seen, but he started becoming irritable and cranky all the time. We also noticed he was having a lot of diarrhea. It took about a year (one of his doctors died suddenly after administering some tests, but before discussing the results with us, and it took us a while to find a replacement), during which we kept feeding him normal (= containing gluten) food so as not to influence the test results, but his endoscopy and blood tests ended up returning the same as mine: there was noticable damage to the esophagus and stomach lining, but no signs of Celiac, and his blood tests came back negative.

We put him on the gluten-free diet anyway. Since then his personality has almost completely reverted to what it used to be - he's again a happy, cheerful boy. He's gained about 10 lbs, and has grown at least an inch. He was so small as to be off the charts before, but now he's at about the 15% area for height/weight by age.

Based on the above experience, my personal advice would be to try the gluten-free diet for a while, and see if it makes you feel better. My personal experience has been that most doctors (in my area anyway) have little understanding of gluten intolerance, and that the blood and endoscopy tests are not accurate enough to catch all the cases.

I know there are a number of people on this board who have similar stories.

I hope this helps, and hope you find a way to feel better.

David
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#648792 Survey For People With Celiac Disease

Posted by Glutin-Free Man on 24 October 2010 - 05:25 PM

I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

1. Sex: Male or Female
2. Age:
3. How long ago were you diagnosed with celiac disease?
4. Does anyone in your family have celiac disease?
5. How severe is your celiac disease?
6. Is it difficult to eat out at restaurants or anywhere outside of your home?
7. Do you believe that there should be more to be done to make this disease more aware to the public?
8. How has this disease impacted your life?
9. What do you think would make celiac disease easier to deal with?

1. Male
2. 42
3. Self diagnosed 2 1/2 years ago
4. My uncle had it
5. Most symptoms aren't bad - irritating rather than debilitating. Joint pain is getting worse -- it's the only thing I've missed work for.
6. Yes - gluten-free is getting easier (more restaurants are starting to recognize and have gluten-free menu items), but I'm also dairy free, which makes it a lot harder.
7. Awareness is increasing, but people still only know that it exists, not what the effects are or how long they last. Awareness among doctors would be especially helpful.
8. Travel is difficult. Family dinners, birthday parties, _any_ parties are hard. I feel sick a lot.
9. Easily available food. I basically have to cook everything myself. I'll eat out occasionally, but it's usually not worth the aggravation, worry, and sickness that results.
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#644485 The Indian Food Thread

Posted by Glutin-Free Man on 06 October 2010 - 05:30 PM

I was going to write up a few more, but then I realized they're all from Madhur Jaffrey's Indian Cooking cookbook. This is a great book for those learning how to cook Indian (it was mu first!). Her dry potatoes and spiced pork chops are great.

I had to pull this old thread back out & reply, since I didn't do it when it was new.

I've been enjoying Indian food more lately (I just cooked it for dinner tonight), and have to agree with the others that Madhur Jaffrey's book is the only one I've ever used.

My family's favorite dinner is:
Minced meat with peas (Kheema matar) - we use lamb
Cauliflower with fennel and mustard seeds (Baghari phool gobi)
Red split lentils with cumin seeds (Masoor dal)
Spicy cucumber wedges (Kheere ke tukray)
and
Onion relish (Pyaz ka laccha)
all served with some basmati rice. They like some naan too, if we have it, but I typically don't make it (wheat), and it's usually too much trouble to go buy some.
I have been making papadums (gluten-free) with dinner lately, and my wife made a big batch of apricot chutney some time ago that we're still working on, so we'll typically have both of those as well.
Indian food nights tend to be a bit feasty around here :)

Other favorites are:
Chicken in a red sweet pepper sauce
(Lal masale wali murghi)
Cabbage with peas
(Bund gobi aur matar)
Dry Okra
(Sookhi bhindi)
Dry Okra is a big favorite -- my family (wife & I plus 7 & 4 year olds) can eat two pounds of Dry Okra (plus meat, dal & rice) at one sitting.

Tonight we tried:
Bombay-style chicken with red lentils
(Murghi aur masoor dal)
It's a nice stew-style dish that would be very good on a cold winter night. It wasn't bad on a cool fall night either.

What are your favorites?
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