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Newcomer In Michigan, Diagnosed Today


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#1 seven

 
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Posted 11 January 2010 - 05:11 PM

Hello, I’m a 28 male posting for the first time...

I had an appointment with my GI today where after a few years of office visits and tests I was given the official diagnosis of celiac disease. I had no real knowledge of celiac disease until about a week ago when I received the results of an endoscopy from a week earlier. The endoscopy showed “a blotchy type of erythema that was nonspecific in nature but somewhat abnormal”, along with a “slightly blunted villous architecture,” and concluded by saying that there were “changes suggestive of incipient celiac disease.” My GI ordered blood work to confirm, results follow:

_______________________________Result______Ref. Range
Gladin IgA Antibody_________________22________( - < 20 )
Gladin IgG Antibody_________________44________( - < 20 )
Tissue Transglutaminase IgG__________3________( - < 20 )

These results confirmed the suggested celiac disease findings in the endoscopy and led to the official diagnosis. It feels surreal to have a diagnosis that explains so many issues that I previously thought were unrelated and that I had grown to live with. In additional to abdominal pain and a frequent gurgling/gas/diarrhea, I have an almost constant dull headache that can get very severe at times, I have a hard time sleeping despite always feeling tired and run down, I suffer from depression/anxiety, my skin itches (especially my legs and arms), and I have patchy psoriasis in various places and over the majority of my scalp.

So here are my questions:

1. How do you interpret my blood work? Gladin IgA is only slightly high, Gladin IgG (seems) very high, and Tissue Transglutaminase IgG is normal. I could logically guess at what that means but I’d like input from someone with more knowledge than myself..

2. Do you feel that the information provided above from the endoscopy and blood work is enough to provide an official diagnosis of celiac disease?

I’m excited that so many things could be improved by a (major) diet modification, but since my gastro problems, let alone the other problems, have never responded significantly to any treatment (various PPI’s), my mind can’t seem to grasp the fact that so many things could be improved by removing one thing from my diet. I understand the differences between PPI’s and a gluten free diet, it just hasn’t has time to really sink in yet and it doesn’t feel real. Anyone else experience these thoughts? How did you feel when you were diagnosed?

This board has been a great resource for a newcomer. Thanks to the board members and admins for providing such a great wealth of information.

-Andrew

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-Seven

06/2006 - Start of gastro problems
08/2007 - Endoscopy provides dx of gastritis
10/2009 - ER with sever abdominal pain, in hospital for 4 days. Endoscopy showed gastritis.
12/2009 - Endoscopy follow-up, biopsy suggestive of celiac disease
01/2010 - Blood testing confirms celiac disease

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#2 Ahorsesoul

 
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Posted 11 January 2010 - 05:36 PM

Andrew,
Welcome to the gluten free world. You will find out how good you can feel. It will take some work and you might go into a withdrawal phase from gluten. Take it as it comes.

Since you've been ill for so long you will welcome the relief from eating gluten free. Slowly go over everything that comes into contact with you. You sound like you may be very sensitive to gluten. Start checking personal care products, replace the obvious gluten items and then learn the un-obvious products (medications, vitamins, soda, beer, blue cheese, soy sauce, spices......).

You will also learn about cross contamination. French fries cooked in oil that has cooked breaded fish will knock you for a set back. Plastic and wooden kitchen utensils/cutting boards, along with coated pans may need to be replaced. A toaster used for poisoned bread should not be used for your bread.

Many people find they need to give up dairy (and sometimes soy) for a few months for their intestines to heal. You will be frustrated and confused at times. It's ok. It will get better.

Remember it is not all in your head!! You now know what has caused the problems in your life. (ok, maybe not all of them!)
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1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#3 seven

 
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Posted 14 January 2010 - 09:28 AM

Thanks for the words of encouragement! It has been a bit overwhelming trying to wrap my head around all of this... it seems like gluten is everywhere! I even found it in my shampoo.

You brought up some interesting points that I had not considered. I would have never thought to replace wooden spoons or to get a new toaster. Looks like I have some shopping to do.

While I think I'm starting to understand the scope of change that this will require, my biggest concern is accidental contact or ingestion because of how much I eat out. Not just at restaurants, but visiting with parents, or my girlfriend's parents... I would never expect people to change their eating habits for me so I'm trying to figure this out how this will work...

Anyway, thanks again for your insight! Can't wait to go gluten-free and finally start feeling better!

-Andrew
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-Seven

06/2006 - Start of gastro problems
08/2007 - Endoscopy provides dx of gastritis
10/2009 - ER with sever abdominal pain, in hospital for 4 days. Endoscopy showed gastritis.
12/2009 - Endoscopy follow-up, biopsy suggestive of celiac disease
01/2010 - Blood testing confirms celiac disease

#4 FishyLibrarian

 
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Posted 14 January 2010 - 10:29 AM

Hi Andrew,

You've definitely come to the right place! The positives that you have on your bloodwork would be enough for most docs to conclude that you have Celiac Disease. The endoscopy is the gold standard for diagnosis, and you're a positive there too. Welcome to your new gluten-free existence! I've been gluten-free since October of 2009 and within 24 hours many of my symptoms were gone....like yours, my stomach gurgled after meals, along with gas and bloating and (thankfully only occasional) diarrhea. I had no idea how ill I had been feeling until I felt well. I had no idea how 'at peace' my gut could be. I had no idea how fatigued I was. So despite the fact that my test results are negative for celiac disease, I will remain gluten-free. Yes, THAT's how good I feel. I hope you'll feel well soon too!

If you're just starting out at this, I'd recommend you start small...pick up some gluten-free staples at your local grocery store like bread, cereal, crackers, granola bars etc. to accompany the foods you already have on hand that you know are safe - fruits, vegetables, meats, etc. These staples will hold you over so you don't starve while you figure out what you currently love to eat that will need to be altered to be gluten-free, and what you can learn to live without completely. Eating out can be very tricky, but most restaurants are aware of what Celiac Disease is and can help you figure out what they serve that's safe for you. As for sharing meals with family and friends, it's all about education, for you and for them. I hate being a high-maintenance diner, who can't eat x & y & z. But you'll probably find that lots of homecooking is already gluten-free, and only a couple of modification are necessary. There are few things safer than meat and potatoes as long as you're careful about sauces. I gave up gluten just before Canadian Thanksgiving; I skipped the stuffing, brought my own gravy and was good to go, especially since my mom baked me my own crust-free pumpkin "pie". Like most of us, you'll get tripped up from time to time on things that seem unlikely to have gluten in them (so far my biggest surprise - Twizzlers. Seriously?) but you'll figure it out and it'll be worth the effort because of how much better you'll feel.

Welcome to the fold and happy (gluten-free) eating!

Cheers,

Lynne
gluten-free since October 6, 2009
New Brunswick, Canada
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#5 mushroom

 
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Posted 14 January 2010 - 11:27 AM

Just a word of warning about cross-contamination, Andrew. If the previous poster's stuffing had been cooked in the bird, the turkey would be contaminated and unsafe for you to eat. This is the kind of way your family can help accommodate you--by cooking the stuffing separately, and not using any gluten-containing bouillon to baste with, for example, would render the turkey safe. It's going to be a learning curve for you and your family, but it's easy for them to help you if they are willing. Having the official diagnosis will help you as some families are disbelieving that you have to be so strict about all gluten, the "just a little bit won't hurt you" brigade. Well, just a little bit will hurt you, especially after you have done some healing.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#6 Coleslawcat

 
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Posted 14 January 2010 - 11:28 AM

Hello, I’m a 28 male posting for the first time...

I had an appointment with my GI today where after a few years of office visits and tests I was given the official diagnosis of celiac disease. I had no real knowledge of celiac disease until about a week ago when I received the results of an endoscopy from a week earlier. The endoscopy showed “a blotchy type of erythema that was nonspecific in nature but somewhat abnormal”, along with a “slightly blunted villous architecture,” and concluded by saying that there were “changes suggestive of incipient celiac disease.” My GI ordered blood work to confirm, results follow:

_______________________________Result______Ref. Range
Gladin IgA Antibody_________________22________( - < 20 )
Gladin IgG Antibody_________________44________( - < 20 )
Tissue Transglutaminase IgG__________3________( - < 20 )

These results confirmed the suggested celiac disease findings in the endoscopy and led to the official diagnosis. It feels surreal to have a diagnosis that explains so many issues that I previously thought were unrelated and that I had grown to live with. In additional to abdominal pain and a frequent gurgling/gas/diarrhea, I have an almost constant dull headache that can get very severe at times, I have a hard time sleeping despite always feeling tired and run down, I suffer from depression/anxiety, my skin itches (especially my legs and arms), and I have patchy psoriasis in various places and over the majority of my scalp.

So here are my questions:

1. How do you interpret my blood work? Gladin IgA is only slightly high, Gladin IgG (seems) very high, and Tissue Transglutaminase IgG is normal. I could logically guess at what that means but I’d like input from someone with more knowledge than myself..

2. Do you feel that the information provided above from the endoscopy and blood work is enough to provide an official diagnosis of celiac disease?

I’m excited that so many things could be improved by a (major) diet modification, but since my gastro problems, let alone the other problems, have never responded significantly to any treatment (various PPI’s), my mind can’t seem to grasp the fact that so many things could be improved by removing one thing from my diet. I understand the differences between PPI’s and a gluten free diet, it just hasn’t has time to really sink in yet and it doesn’t feel real. Anyone else experience these thoughts? How did you feel when you were diagnosed?

This board has been a great resource for a newcomer. Thanks to the board members and admins for providing such a great wealth of information.

-Andrew


I'm new to the gluten free diet as well. I got my celiac diagnosis on December 16th, only 1 day after first hearing the possibility. I didn't even realize my doctor had ran the blood panel and I already had the endoscopy scheduled for other reasons so he was able to do the biopsy the day after my bloodwork came back positive. I used to get headaches all the time too and had off and on nausea/vomiting. I'm happy to report after only 2 days on the gluten free diet my headaches have virtually disappeared. The nausea is gone too, although I had a nasty bout of a stomach bug shortly after going gluten free so I took a bit to recover from that.

It is very hard to avoid cross contamination or accidently glutening, but I'm getting better about it.
you live alone? For me the biggest problem is not wanting to cut out all the gluteny snacks my kids love. But they are toddlers and thus make a huge mess and get crumbs everywhere so I may be removing the snacks from the house soon. My husband has been very supportive and agreed to go gluten free at home with me. One of the first things I did was buy a rice cooker. I eat so much more rice now than I ever did before. I've found that Whole Foods is an excellent source for gluten free food. They don't seem to mark up the gluten free products anymore than most stores and they have a much bigger selection than most. Trader Joes also has a great price on brown rice pasta. The adjustment has been huge, but already in just 1 month I have found how to bake gluten free cakes and brownies and modify many of my favorite meals to be gluten free. Mexican food can be easy to modify too, just serve it on corn tortillas instead of flour tortillas.
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