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MARTHAJOY's Photo MARTHAJOY Posts: 913
10/10/07 9:27 P

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Saw my gastro/celiac doctor and she thought maybe my severe reaction could have been due to garlic (which I am also allergic to) rather than to the bread crumbs! Anyway, I am to go in on Nov. 9th and have blood work done to see how the glutens are doing. She's out of town til mid-November anyway. I like her and trust her. She listened to my belly and abdomen and said it looks/sounds better.

 
DOTSLADY's Photo DOTSLADY Posts: 10,024
10/7/07 9:24 P

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Picky eater huh? Might he have leaky gut by another means, not necessarily celiac then? Maybe reading this link will help: http://www.leakygut.co.uk/index.htm

Maybe he's having these pains because he's just malnourished in general.

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


3,244 Days since:  gluten
 
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REGANSMOM's Photo REGANSMOM SparkPoints: (0)
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10/7/07 5:18 P

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Yeah, it was when he was negative or RA that he was tested for CD. He doesn't choose to eat greens, I have to force it. He will only eat cooked vegies, again not by his choosing. He's a very picky eater. He always had intestinal problems when he ate anything that had dairy, hence the avoidance.

 
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DOTSLADY's Photo DOTSLADY Posts: 10,024
10/7/07 12:01 P

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Oh, sorry: vit D = vitamin D. With celiac, you don't have to have intestinal issues (until the last couple years I didn't, but still, I had no gut pains. My symptoms were MAINLY neurological: depression, foggy brained, couldn't think, etc, and I had bone pain and muscle aches, likely fibromyalgia).

I'm osteopenic and I did have lots of dairy. You can get calcium from other sources, but since you'd mentioned DH doesn't eat greens, or was it vegetables either, maybe his lacking of calcium was diet related, rather than malabsorption. He could have sesame seeds sprinkled on things ... just a small idea for calcium, besides say, Posture D supplement.

Was he checked for Rheumatoid Arthritis? I've read that eliminating beef, lamb, pork and wheat help that (in one study anyway).

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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REGANSMOM's Photo REGANSMOM SparkPoints: (0)
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10/7/07 11:53 A

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Greetings again...DH is coming up to the final days of his 3 month challenge although I'm not sure what the plan is. He NEVER had any intestional issues during the 3 months. His joint pain was no better or worse...his joints seem to follow pressure changes in the weather more than anything else.

What is a Vit D? I think he's had everything possible tested. The new doc indicated that he thought he might have been misdiagnosed with the exception of the osteopenia that he also has a age 50. However his common sense wife says if you avoid everything that's has dairy in it all your life without supplimenting your calcium how can you not develop ostepenia?

Well, whatever, at least we got to go on vacation with our daughters for a week and it didn't involve all the preparation that would have had to be done and that was nice. I'll let you all know if anything changes.

 
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DOTSLADY's Photo DOTSLADY Posts: 10,024
10/7/07 11:07 A

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That's weird MarthaJoy. I thought you reacted to the crumbs in your restaurant salad not too long ago. Be careful -- the honeymoon doesn't last forever I hear. Why are you seeing a "specialist" (what kind?) ... good luck with it.

I wonder how Regansmom's DH is doing??? And I wonder if his Vit D was tested? My bone pains diminished considerably and I was thinking it was because my Vit D went up with my Rx (also my sleep improved).

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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MARTHAJOY's Photo MARTHAJOY Posts: 913
10/7/07 1:18 A

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I hope EVERYone is doing okay. I tested myself by eating just a bit of delicious bread the other day, and it sat okay.What a big surprise! I'm seeing the specialist next week, and though she's quite nice, I'm not looking forward to it very much...We'll see.

 
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REGANSMOM's Photo REGANSMOM SparkPoints: (0)
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7/22/07 10:39 A

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Nope, he's never had the instestinal problems. Was only tested because of unexplained joint pain. His initial blood tests did not rule out CD but suggested further testing. His 1st doc was on the young side and obviously inexperienced with CD even though he was born and raised in Ireland. His new doc has been around and has a more real world approach rather than strictly clinical.

 
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MARTHAJOY's Photo MARTHAJOY Posts: 913
7/22/07 12:45 A

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This Celiac disease is very strange... I wonder if his blood work indicated celiac or not. Did he exhibit the classic intestinal signs of the illness:bloating, diarhhea(sp) or vomiting? Have any of these returned? Or maybe he doesn't have our illness, lucky guy... Do keep us informed, please.
As for me, the dox wanted me to do a two week gluten challenge when my blood work was so high and I REFUSED knowing I would start up with all those intestinal symptoms again. I changed dox, too.

 
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REGANSMOM's Photo REGANSMOM SparkPoints: (0)
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7/21/07 8:21 P

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Update: hubby is 11 days into his 3 month challenge and has had no ill effects from eating gluten. His joint pain is no worse and he hasn't had any gastro problems. In fact, his acid reflux has been better because he's eating bread again. He is having whatever everybody else is eating and enjoying himself. I am starting to be aware of the convenience products again although I have to be careful not to undermine my personal weight loss efforts. He belongs to a Yahoo Celiac's group and I think is posting this experience there (maybe not).

 
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DOTSLADY's Photo DOTSLADY Posts: 10,024
7/14/07 12:06 P

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Have you posted this question to the celiac listserv? The larger audience might have different experiences or thoughts.

http://tinyurl.com/2fd52l


KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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REGANSMOM's Photo REGANSMOM SparkPoints: (0)
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7/14/07 12:00 P

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In response, the blood work show 2 out of 4 factors(?) which lead to the biopsy in which the local lab said yes but the Mayo lab said no which lead to the genetics test where again, 2 factors out of 4 factors present and statement that they couldn't rule out Celiacs but also could not confirm it.

The joint pain did not improve. He has no gastro problems either way.

 
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DOTSLADY's Photo DOTSLADY Posts: 10,024
7/14/07 11:42 A

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I'm wondering what tests were run and what exactly was so conflicting about the results. The blood labs were conflicting or the biopsy results were conflicting, or both?

I think the first doctor was smart in one sense to have tested him for a joint pain symptom (and I guess lactose intolerance). Thinking gluten was in potatoes ... oh well. It was smart to go to another doctor, too.

Re: osteopenia - I just heard that the countries with the most dairy intake (US and Denmark) were the ones with highest osteoporosis numbers also. I don't think it's because of lack of calcium. I'm wondering if it's because we eat so much wheat.

Oxylates block absorption of calcium. Sources of oxylates: http://tinyurl.com/35vzm (spinach, wheat, berries, soy, tea, cocoa, almonds ... if he's allergic to produce maybe this isn't why either, I don't know).

Here's a printable list: http://www.dryarnell.com/Files/Oxalate_foo
ds_Yarnell.pdf or http://tinyurl.com/2zc5ot

I have osteopenia also. I was very conscientious about getting my whole grains daily for years. I also had a pica symptom of chewing ... ice and sunflower seeds. I've since read that too much sodium (from the seeds) may also have leeched calcium from my bones. I still crave salt - but I'm trying to whiten my knuckles with it.

Question: how did his joints feel during his time gf? Was there any difference?

I can imagine the changeover in diet/cooking is unnerving - just like going ON it! Keep us posted. This is interesting.




KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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REGANSMOM's Photo REGANSMOM SparkPoints: (0)
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7/14/07 9:36 A

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Last September my husband was diag. with CD even though his tests were never positive but inconclusive enough not to rule out CD. He has none of the usual symptoms. He was tested because of unexplained joint pain. He is also lactose intolerant and allergic to fresh produce. He recently learned he has osteopenia but he avoids all dairy so that wasn't a surprise. He decided to get a second opinion after his dr. made some statements that made him think that he really didn't know the facts about CD like potatoes contain gluten. His new dr. has been practicing longer and his initial reaction was that he didn't have CD but agreed there was some conflicting test results that would make one want to error on the prevention side. So....he is back to his old diet for the next 3 months and will then have another biopsy that will not be sent to the local lab (which is the main conflicting test result and was the opposite of the Mayo clinic). He is reveling in his new freedom and we visiting some of our old haunts. He has had no negative reaction to eating gluten. I'm sharing this because I feel weird about it. After months of scanning recipes and checking out restaurants it's disturbing to just cook whatever I feel like without have to make sure there are enough choices for him. Thanks for reading this...if you make it through...yet another chapter in my life.

 
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