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ravenwoodglass

Member Since 17 Apr 2004
Offline Last Active Today, 02:41 AM
*****

#631717 What Is Your Response When People Say.....

Posted by ravenwoodglass on 14 August 2010 - 03:03 PM

I would say 'Yea it could be worse, I could be one of the celiac's diagnosed by autopsy' I must give credit to my current GI for that comment spoken when he found out how far advanced I got before I was diagnosed.
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#631628 Do You Think My Asian-Adoptive Child Could Have Celiac?

Posted by ravenwoodglass on 14 August 2010 - 04:54 AM

Thanks for this advice, all.
I have a dermatologist appointment for her already set. I plan to have her go to a gastro ped. dr. as well.
Hopefully we can find out if she has this or not.

Thanks again for taking the time.
I was very interested to hear about celiac in Japan.
We lived there for a few years.
My daughter is actually from Central Asia though.

I"ll let you all know how it goes.

Thanks again.
I think we're on the right path to pursue this.


I just wanted to add a note on the gene testing. Although I am caucasian the double copies of the genes I carry are genes that are associated with celiac in the Far and Middle East. If you chose to do gene testing make sure they are not just looking for DQ2 or DQ8 as she may not have either of those. Her symptoms sound similiar to the ones I had as a child and my DH was misdiagnosed as 'poison ivy' for most of my childhood and then as atopic dermatitis as an adult. Make sure the Derm knows to biopsy next to the lesion and not the lesion itself. Excema is also associated with celiac so even if it is that it may resolve on the diet. My DD had that. After you are done with all testing do give the diet a good strict try for her. Although many think that celiac is not as prevelant in people of Asian background it is becoming much more common as their diet is being 'Westernized'.
I can't stress this enough, please do be sure to try the diet with her after all testing is done as false negatives are common especially in children.
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#631626 Formal Diagnosis: Is It Worth It?

Posted by ravenwoodglass on 14 August 2010 - 04:30 AM

I agree you are already diagnosed. Make sure your PCP does vitamin and minerals levels and you can get another celiac panel done in 6 months or so to see if your antibodies are going down. You should also get a scan for osteoporosis, although this test is primarily done on women men with celiac are at risk for bone loss also. If you do show signs of osteoporosis or osteopenia, it's precursor increase your calcium and vit D as that will help it and should be the first step before you take any of the bone building drugs.
If you continue to have issues or other ones appear you can always go back to the GI and get scoped in case anything else is going on. Being gluten free will not effect testing for other problems.
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#631547 Is This Celiac Disease Or Gluten Intolerance Or Something Else?

Posted by ravenwoodglass on 13 August 2010 - 04:29 PM

Thanks to all of you who have posted your thoughts in this thread. And yes, the thought of a "gluten challenge" does induce a certain amount of queasiness, based on recent SEVERE pain and problems after enjoying a carrot cupcake and, the week before, some pizza!

Have kept a journal for years that substantiates the growing suspicion (conviction?) that either wheat or gluten induces A LOT OF PAIN & PROBLEMS. It's just so hard to accept a future without pizza (somehow, it seems to be THE hardest gluten-laden food to relinquish!). However, last week we found a pizza that is "almost" as good as gluten-loaded pizza. Some of you may have already found and enjoyed it. It is by Glutino (their gluten-free breads are good, too); the one I tried was their "spinach and feta" model. I added some gluten-free pizza sauce, mushrooms and black olives and sprinkled a bit of fennel (the spice that's in Italian sausage) on it, and then followed their baking instructions. Surprisingly good!--albeit a bit pricey. I think it cost $5-something at Whole Foods. It really was more like a pizza-COOKIE, based on the small size. But it was tasty, actually SATISFIED my craving for pizza, and the crust was NOT BAD AT ALL. So maybe there is hope! :-)


I love pizza and have it about once a week. I get Kinnickinnick pizza crusts at a package of 4 for about 9 bucks. I add my own cheese and whatever toppings I want. The crusts are nice and much like the crusts I remember from my gluten days. If I am feeling like taking the time and want an awesome deep dish I get Gluten Free Pantry's French Bread mix and follow their directions to make it as a pizza crust. I usually chill it for a bit before I spread it. A real treat when I have time.
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#631514 I Think This Is Bigger Than Me Right Now.

Posted by ravenwoodglass on 13 August 2010 - 01:35 PM

Gosh, just read that again and it sounds so depressing, I'm so sorry! I meant that recognizing this helped me understand some of my feelings about food lately, if that makes sense. I'm quite angry with food, I think.


Don't get down on yourself. There is nothing to apologize for. There is a greiving process that many of us go through when we are struggling with this diet in the beginning. You have a right to be angry and to be sad also. You'll get through it in time and you are in a great place to vent those feelings.
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#631509 More Testing On Tummy Problems

Posted by ravenwoodglass on 13 August 2010 - 01:25 PM

Glad they got the results so quickly for you. Did they give the results to you? One thing you do want to keep in mind is that false negatives are not uncommon. When you are done with all testing do give the diet a good strict try no matter what the results.
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#631221 Short-Term Memory Problems

Posted by ravenwoodglass on 12 August 2010 - 03:13 PM

I wonder if my carpal-tunnel-like symptoms are also related to my crappy memory - since they're both seemingly neurological: my hands go numb every night, sometimes 10 times, no matter what position they are in. I think my B levels were tested when I asked my doctor to check a bunch of things including my vitamin D level (partly because of the hand numbness) - but I'll look for the labwork and check. Vitamin D supplements and sunlight haven't helped the numbness, but they did help my energy. I take magnesium here and there, but I'm going to start taking it daily.

I try very hard to avoid glutenings and cc. I think my last glutening was from 'gluten free' honey nut Chex. Sigh.


I agree that you should get some sublingual B12 supplements. B12 is one that it can take some time for the labs to show the deficiency and some of the ranges are still set too low. It is a water soluable vitamin so you can't take too much as your body will simply excrete the excess. Give the sublinguals a try for at least a couple of months.
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#631185 "But You Can Eat Whole Wheat, Right?"

Posted by ravenwoodglass on 12 August 2010 - 12:19 PM

Really? I thought Spelt was just another (older) form of wheat. I thought I saw someone with a wheat allergy post here that they reacted to spelt, so I guess that's where I got confused. Thanks for the info.


Actually I think you are right. Spelt is wheat and I do think someone allergic to or intolerant to wheat would react. But I could of course be wrong.
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#631168 Gluten-Free Products And Sugar

Posted by ravenwoodglass on 12 August 2010 - 11:17 AM

It is best at first to go with as much whole unprocessed food as you can. Go light on the replacement items, perhaps a bread or cracker but for the most part just go with naturally gluten free food. You will heal more quickly and it will be easier to control your calories that way.
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#630796 Help! Unexplained Scary Symptoms.

Posted by ravenwoodglass on 11 August 2010 - 04:32 AM

Your onset of symptoms and the symptoms are very familiar to me. Your B12 levels are really quite low so I hope you are supplementing with sublingual B12. After you are done testing I hope you will give the diet a shot no matter what the results.
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#630597 Help With These Symptoms! Tmi

Posted by ravenwoodglass on 10 August 2010 - 07:21 AM

Ughh I wish I didn't eat that cheese, I don't eat dairy, haven't in months and just wanted to try it. In the past I had accidental dairy exposure and had the bloody stools but never as bad as this last one.

No more dairy for me ever. Dh ate the same cheese and had no issues.


I think your wise to avoid dairy permanently if this is a common reaction for you. If DH ate the same cheese with no bad effects then it was likely IMHO that since you have been avoiding it that your body was telling you in no uncertain terms that it doesn't want you consuming dairy.
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#630575 Funny Restaurant Phone Call

Posted by ravenwoodglass on 10 August 2010 - 03:09 AM

In her case it's very much like diabetic neuropathy, but she is not diabetic. As far as I know, her symptoms are sensory. She gets tingling, pins and needles, numb patches, and sometimes outright pain in her feet. As far as I know there is no wasting but she is completely unable to wear tight shoes like pumps because they hurt her too much. She also suffers from vertigo.

She's had full neuro workups and they can't find any reason for the neuropathy other than some B12 deficiency. She has been taking B12 for a while and it hasn't helped so her neurologist suggested gluten. She's not positive for anti-gliadin IgA, so it's a bit of a shot in the dark but nothing else has worked.


I hope you can get her to fully understand what the gluten free diet means. When we have neuro effects we need to be strict with the diet to have them resolve. It also takes more time than getting rid of just tummy issues. It sounds like she may have ataxia and things will only get worse if she doesn't adhere to the diet.
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#630574 Help With These Symptoms! Tmi

Posted by ravenwoodglass on 10 August 2010 - 03:03 AM

I agree that you likely have food poisoning. Go to your regular doctor and get a stool sample taken to find out what bug may have gotten you and if it is still present. If it is a short course of antibiotics will be needed. Some of the bugs can be with you for quite a while if not treated so insist that a stool sample is done even if your doctor is reluctant. I had salmonella for weeks and my doctor insisted that my 'IBS' was just flaring up worse or I had a virus. I finally got the stool samples done and two days later got a phone call and an apology.
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#630388 "But You Can Eat Whole Wheat, Right?"

Posted by ravenwoodglass on 09 August 2010 - 09:37 AM

some people are so insensitive! after years spent not eating ever, I think I would say, 'thank you. and how are you doing on YOUR diet?' and look very concerned :) probly hard to do with a straight face :D


After the description of the aforementioned person I think that is a perfect response. :D
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#630062 "But You Can Eat Whole Wheat, Right?"

Posted by ravenwoodglass on 08 August 2010 - 03:16 AM

im new to the 100% gluten free... question- do we ALWAYS have to avoid "natural flavors" & "artificial flavors" ?? it's EVERYWHERE :( still confused on that one.

and.. LOVE David Sedaris :D


Artifical flavors are not ususally a concern. I always check with natural flavors to be on the safe side.
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