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New To This And Still Not Sure If It Is Celiac Disease


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32 replies to this topic

#16 Doublelsega

 
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Posted 02 May 2012 - 07:51 AM

Hi doublelsega! I see this is your first post, welcome to the board! I happened to pick this up because I'm subscribed to this particular thread, and although you may certainly get some response by others, but you may also want to repost in a brand new thread so that it could be viewed by more folks who have possibly experienced what you have. Or a helpful board administrator may do it for you.

I love this board because there are so many knowledgeable and sincerely caring people who monitor and respond. I personally haven't experienced what you have but it sounds very familiar after reading hundreds of posts in the past couple years and I just want your post to be seen by forum members with first hand knowledge of this symptom.

So glad you're here!

Thanks for the welcome! I am new to this board and to Celiac so I am learning. I appreciate any help and suggestions. I look forward to reading more from those of you that have been through the newbie things!
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#17 scaredblossom

 
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Posted 02 May 2012 - 12:38 PM

Update: Endoscopy biopsy came back fine, small bowel series came back fine, blood works still out :( if the blood work is ok they want to check my colon since its been 12 yrs since it's been checked...this doesn't make me feel any better!! What now???
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#18 scaredblossom

 
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Posted 02 May 2012 - 12:50 PM

Thanks for the welcome! I am new to this board and to Celiac so I am learning. I appreciate any help and suggestions. I look forward to reading more from those of you that have been through the newbie things!

The Dr did say the barium went through my system fast! We went to Cracker Barrel right afterward and I ate bisquits and gravy and had diarrhea in no time, put it this way we were still in the store...I had pains most of the day as well! Had a safe supper steak and baked potato and was mostly fine, much less pain! At 130am I woke up ate 2 brownies and was in pain again!! :unsure: HELP!!!
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#19 ravenwoodglass

 
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Posted 02 May 2012 - 01:12 PM

The Dr did say the barium went through my system fast! We went to Cracker Barrel right afterward and I ate bisquits and gravy and had diarrhea in no time, put it this way we were still in the store...I had pains most of the day as well! Had a safe supper steak and baked potato and was mostly fine, much less pain! At 130am I woke up ate 2 brownies and was in pain again!! :unsure: HELP!!!


If you are done with celiac related testing give the diet a good strict try for at least a couple of months.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#20 ravenwoodglass

 
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Posted 02 May 2012 - 01:14 PM

I'm really glad I found this thread. I've been. feeling the same way. Today I had two chicken legs and it made my stomach hurt so bad, and I got really nauseous. I am just trying to eat gluten so I can test, but it's such a terrible and immediate feeling for me. I can't believe it, I love chicken, but I was grossed out while eating it and I didn't even touch the biscuit.. I was really stressed out the last week (got married and drove 21 hours to Disney World for our honeymoon where my wife drug me all over the 4 parks and stuffing lots of gluten down.) I think the stress is what caused me to act so badly to gluten for the first time I've noticed, and every time since. It took me a week to catch on to how I was feeling every time I ate and all the issues. Dairy products too. Thought I had to have had food poisoning, but now I'm pretty certain it's celiac. Hopefully get tested this week. I ate some rice for dinner and feel better for sure, but still my stomach is not happy. Nothing compared to when I ate the chicken though.


First off congrats on the wedding. Wishing you much happiness. Do keep eating gluten until your celiac related testing is done and then give the diet a good strict try. When you go for testing do make sure the doctor does stool testing to make sure that it isn't a case of food poisoning since these symptoms came on suddenly. Hope your feeling better soon.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#21 scaredblossom

 
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Posted 02 May 2012 - 01:17 PM

If you are done with celiac related testing give the diet a good strict try for at least a couple of months.

That was what I was thinking after reading how sooo many have been misdiagnosed, hoping something positive comes out of all this!!
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#22 scaredblossom

 
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Posted 02 May 2012 - 07:29 PM

Feeling pretty great tonight :D We went to LaRosa's tonight in Oxford, I ate gluten-free pizza then we went to Krogers and found a pretty good selection of gluten-free foods and such! I also got me some fresh fruit! I made me a container filled with cut up strawberries, kiwi, black berries and grapes for work for the next three nights!! Oh yeah bought gluten-free brownie mix and cornbread mix....it is very expensive though!! Oh well maybe things will be ok!!
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#23 tom

 
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Posted 02 May 2012 - 11:45 PM

Blossom's not so Scared anymore, eh? Looks like you're on the right track.
My money's on it being more than ok. ;)


I'm really glad I found this thread. I've been feeling the same way. Today I had two chicken legs and it made my stomach hurt so bad, and I got really nauseous. I am just trying to eat gluten so I can test, but it's such a terrible and immediate feeling for me.
...

Make sure the Dr knows this. The eating itself is a test w/ a result, but not all Drs inquire about it.

I'd even want to call the office if I were towards the end of the challenge anyway just to see if a nurse or whoever could see if the appt could be sooner.
As I keep saying, there's no consensus on duration or daily amount for a gluten challenge.

Maybe future ex-vivo testing will replace the challenge. (Not feasible yet but I like the concept of snipping a bit of intestine, popping it in a testtube and feeding THAT the gluten! "Peptide fragments" maybe?)


Pro, have you started your own thread? Not that you have to but it's easier when ppl ask questions like "Is your appt far off?"
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#24 scaredblossom

 
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Posted 04 May 2012 - 04:20 AM

Ugh ok so last night was rough, one slice of gluten-free pizza, and a large bowl of fruit wasn't enough to get me through the night! I got two bags of plain lays chips and about a quarter of a 20oz Dr Pepper, checked my sugar about 30 mins later and it was only 91...not great considering it should've been higher after eating! Also is it strange that I seem to be getting headaches when I eat any type of potatoes? Just seemed to notice getting a headache every time I eat potato products, maybe it's not related but it seems to only happen then!
BTW If at anytime I am rambling too much or need to start a new thread please let me know =}
Forgot to add before that in 05 I was diagnosed hypoglycemic, but it seemed to resolve itself with diet!!
All in all aside from low blood sugar, hunger, headaches, and constant joint pain I am feeling better lol odd to feel better with so many things still going on huh!! Such is life!! :unsure:
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#25 ravenwoodglass

 
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Posted 04 May 2012 - 04:50 AM

Ugh ok so last night was rough, one slice of gluten-free pizza, and a large bowl of fruit wasn't enough to get me through the night! I got two bags of plain lays chips and about a quarter of a 20oz Dr Pepper, checked my sugar about 30 mins later and it was only 91...not great considering it should've been higher after eating! Also is it strange that I seem to be getting headaches when I eat any type of potatoes? Just seemed to notice getting a headache every time I eat potato products, maybe it's not related but it seems to only happen then!
BTW If at anytime I am rambling too much or need to start a new thread please let me know =}
Forgot to add before that in 05 I was diagnosed hypoglycemic, but it seemed to resolve itself with diet!!
All in all aside from low blood sugar, hunger, headaches, and constant joint pain I am feeling better lol odd to feel better with so many things still going on huh!! Such is life!! :unsure:

It might be helpful blood sugar wise to check it before you eat then at 1, 2 and 3 hour intervals after. Do this with each meal and record the findings and take them to the doctors office at your next visit. You can also ask your doctor to do an A1c which will show your BS average over a 3 month period.
If you can go with more whole food and less stuff like pizza, chips and soda for a while that would be a good thing.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#26 scaredblossom

 
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Posted 04 May 2012 - 12:34 PM

It might be helpful blood sugar wise to check it before you eat then at 1, 2 and 3 hour intervals after. Do this with each meal and record the findings and take them to the doctors office at your next visit. You can also ask your doctor to do an A1c which will show your BS average over a 3 month period.
If you can go with more whole food and less stuff like pizza, chips and soda for a while that would be a good thing.

Okay I'm being dumb right now despite being a Nurse (we're talking about me not a patient)define whole foods!!
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#27 ravenwoodglass

 
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Posted 04 May 2012 - 01:57 PM

Okay I'm being dumb right now despite being a Nurse (we're talking about me not a patient)define whole foods!!


Not a dumb question at all in this day of premade and processed and boxed foods. Whole foods would be fresh meat, chicken, fish, eggs, veggies and fruits etc. in their natural state rather than processed or premade. Like our grandparents used to cook. Some of us find it helpful to wait until we have healed a bit before we try too many special gluten free baked goods. Some are made with stuff like bean flour, sorghum, soy flour etc that may be hard to tolerate until you have healed a bit.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#28 tom

 
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Posted 04 May 2012 - 02:00 PM

Sorry you're feeling poorly again, blossom.

...
Also is it strange that I seem to be getting headaches when I eat any type of potatoes? Just seemed to notice getting a headache every time I eat potato products, maybe it's not related but it seems to only happen then!


I get the feeling this doesn't include trying a plain baked potato.
Which oil is used in potato chips makes a HUGE difference for me. Canola makes me dizzy so I usually have to skip anything that has the "this or this or this or this oil" since one is invariably canola.


BTW If at anytime I am rambling too much or need to start a new thread please let me know =}
...

Ramble away & we'll ramble back & if you have a new topic, or want a new thread to ask or comment on anything else ("is this bean flour supposed to smell like this?") it's all up to you.
And I'm sure ppl will keep replying in this thread while anything's still being asked or commented on.

The other new member, Pro, I thought might prefer his own thread. Heh, silly me, just checked through his PROfile & he'd already started one.


I think we use the term 'whole foods' as mostly non-processed. My 1-ingredient almond butter could be called processed compared to buying raw unshelled almonds, but it's a far cry from a couple inches of ingredients & processes in making a gluten-free cracker.
Sometimes I think of it as buying ingredients.

P.S. hehe I was slow enough finishing that Raven beat me to that last part! (Better, too)
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#29 Pro

 
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Posted 04 May 2012 - 02:44 PM

I'm so sorry you had a rough day!! I could barely eat yesterday, I had about 3/4 of a small hot pocket at work around 10pm! It of course stayed down long enough for me to be past the 12am deadline for nothing to eat or drink for my tests today!! I'm hungry but afraid to eat!!


Thank you :D it's nice to have people who understand, and don't just write you off as exaggerating.

First off congrats on the wedding. Wishing you much happiness. Do keep eating gluten until your celiac related testing is done and then give the diet a good strict try. When you go for testing do make sure the doctor does stool testing to make sure that it isn't a case of food poisoning since these symptoms came on suddenly. Hope your feeling better soon.


Thank you! I was going to, but I just couldn't bare it any longer. It probably helps that I don't have health insurance either, and don't want to foot that much money to be told to eat gluten free :P


Pro, have you started your own thread? Not that you have to but it's easier when ppl ask questions like "Is your appt far off?"


I just started one, it is awaiting moderation.

The other new member, Pro, I thought might prefer his own thread. Heh, silly me, just checked through his PROfile & he'd already started one.

Not many people look at the introduction threads, so I am making one in this coping section. It is more in depth than my original post. Should be approved before too long. Very punny joke by the way :P

Sorry if I jacked your thread blossom. I hope you are feeling better now! :D
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#30 scaredblossom

 
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Posted 05 May 2012 - 04:10 AM

Not a prob Pro :D The only prob I have with the whole foods thing is while at work....hard to get a good lunch put together! I have always had issues with dairy so just eating plain cheese is a no go, yogart would probably work though! Nuts have always made my stomach hurt and popcorn kernels! I hate hate hate veggies...the only raw veggie I'll eat is very crisp lettuce! Cooked veggies are limited to green beans with potatoes cooked in bacon grease mmmmm or corn on the cob (only in moderation though, kernel thing) :huh: So now what??? I took fresh fruit last night, some plain chips, and beef jerky and no headaches and sugar didn't do bad! Before eating it was 79 but an hr out it was 112 and two hrs out 149, three hours it was 102! It's so hard not to order takeout or eat junk from the vending machine (can't see the labels though so not a safe bet) I have never been one to pack my lunch!

Oh yeah I have been stressing big time over waiting on my blood work! I guess I previously ha failed to mention family history; my sister has been dx with Lupus and Colitis and urinary issues (including stones), my mother has Crohns and Colitis breast cancer twice and a slew of heart conditions, dad has DM and HTN, Paternal Grandmother died from breast cancer, and Paternal Grandfather bone cancer I think, Maternal Uncle died of cirohsis of the liver. I have wondered if I might have Lupus but idk, when I was younger I had severe sensitivity to the cold! I would get hives and blisters all over my body if I got too cold and my hands an feet would swell to the point they felt like they would pop! When i was diagnosed hypoglycemic the Dr said I react differently to sugar, almost like i'm allergic to it! I will spike up then crash hard and lower than most!! I just wish I knew what was going on in my body!! I'm only 34 and most of the time I feel in my 80's!! :(
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