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Any New Jersey Celiac's Out There?
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Hi!

I'm 31 years old and just joined the board. I have Type 1 Diabetes and am pre-diagnosis but will be having an endoscopy soon so hopefully will know more. My husband and I live in Middlesex County in NJ but I have recently moved to NJ and am looking for people like me to talk to. My husband has no food allergies or issues to speak of, so it's just me. Kind of gets isolating from time to time particularly when I'm dealing with symptoms that people may be able to sympathize with but cannot truly empathize because they have no similar issues. Would just be good to talk to someone while I am waiting for more information...

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Hi!

I'm 31 years old and just joined the board. I have Type 1 Diabetes and am pre-diagnosis but will be having an endoscopy soon so hopefully will know more. My husband and I live in Middlesex County in NJ but I have recently moved to NJ and am looking for people like me to talk to. My husband has no food allergies or issues to speak of, so it's just me. Kind of gets isolating from time to time particularly when I'm dealing with symptoms that people may be able to sympathize with but cannot truly empathize because they have no similar issues. Would just be good to talk to someone while I am waiting for more information...

Hi Sarah

I live in Middlesex County. I suggest you read the following books:

"Real Life With Celiac Disease" by Melinda Dennis & Daniel Leffler.

"The Inside Tract" by Gerard Mullin & Kathie M. Swift.

I've been a Celiac patient since Oct.,1983. Since 2007, got IBS, GERD, Diverticulosis. and now (2012) I'm pre-diabetic. Gee, all these food restrictions are very confusing. Gotta eat something!! Still living!! Still learning!! You'll be OK. My wife thrives on a GFD and takes good care me accordingly.

What do you want to talk about, public or privately(send me a PM)?

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I'm in Union County, NJ - right next to you - I have some great recommendations for places to go!! Would love to talk! Feel free to message me anytime!!

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Laura,

I noticed in your personal notes: "acid reflux/GERD (stopped since eating gluten-free").

Im gluten-free and still have issues with AR/GERD. In your diet, do do also avoid foods like citrus, fatty/fried, spicy, mint, vinegar, caffeine, alcohol, chocolate, and tomato sauce?

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Laura,

I noticed in your personal notes: "acid reflux/GERD (stopped since eating gluten-free").

Im gluten-free and still have issues with AR/GERD. In your diet, do do also avoid foods like citrus, fatty/fried, spicy, mint, vinegar, caffeine, alcohol, chocolate, and tomato sauce?

Hey Opa!

I haven't been actively avoiding those foods, but as a nursing student I know that I should be! The only thing that I notice now is that if I go overboard with citrus type drinks (like frozen fruity alcoholic beverages) then I will get a bit of pain and reflux. I used to be uncomfortable all the time but since going gluten free I noticed that most of it went away. Now when I get glutened, it comes right back again! Have you discussed your symptoms with your doc? They can prescribe some different types of medications if you're feeling very uncomfortable...

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Hey Opa!

............, but as a nursing student I know that I should be! ......... I go overboard with citrus type drinks (like frozen fruity alcoholic beverages) then I will get a bit of pain and reflux. t away. Now when I get glutened, it comes right back again! Have you discussed your symptoms with your doc? They can prescribe some different types of medications if you're feeling very uncomfortable...

Me too, I went "overboard" with chocolate and balsam vineagrette. My GI Doc put me on Omeprazole, 40mg/1daily. It's starting to help.

He told me to take 1/day for the REST OF MY LIFE. :unsure: I read that is not good therapy to take long term. To much PPI's can cause an overgrowth of clostridium difficle and other bad bugs in the stomach and small intestines. Other things like pneumonia, hip fractures, malabsorption of vitamins & minerals. As a student nurse, what do think?

My best wishes for nursing school and good health to you.

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I haven't been officially diagnosed with anything yet, but I believe I have some sort of intolerance. I'm seeing my doctor on Tuesday. But anyway, I am located in Northern NJ.

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Hi!

What are of Northern NJ are you in?

Good luck with the doctor! Hope you get a much better answer than I did! :)

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Hi!

What are of Northern NJ are you in?

Good luck with the doctor! Hope you get a much better answer than I did! :)

Hi....I am in Sussex County, NJ. Thanks, I hope so too. Doctors seem to blow off my symptoms for the past two years. Hope they can figure out what is going on with you and give you the help you need.

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Wow, you are way up there!

I hear you on ignoring symptoms! That is the story of my life! I was telling people for 8 months I thought I had diabetes and no one listened to me until a routine blood test showed I had a blood sugar of 420 and an A1C of 14.3. Now, they are not listening to me for other reasons...if you find a good doctor, hold on to them! They are few and far between that's for sure!! I am still holding out hope of finding a better doc.

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......... I had a blood sugar of 420 and an A1C of 14.3.

At 420, what symptoms do you have?

I'm not diabetic, and my highest was 168mg/dL. I ate 160 grams of sugary foods that day and I got very dizzy after dinner with the room spinning. With me, it's sugar spikes. When I feel crummy, I check myself with a glucose meter.

How do your numbers run on a typical day as opposed to one lab result?

I do hope you find a likeable Doc.

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Well, remember this was probably almost four years ago, but I had the classic symptoms- I was thirsty all the time - could never get enough to drink (my sister, a nurse, told me it was be because I drank too much caffeine), I was always hungry but was down to about 90 pounds at time of DX...and at that point, I had the beginnings of neuropathy in my feet and fevers on and off - I couldn't stay well.

On a typical day, my average blood sugar is probably 150 or so...my A1C at my last visit was 6.7 (and that was up from before). Although I have notice that when I have a food intolerance response, my blood sugar tends to go up and I have some trouble getting it down again

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On a typical day, my average blood sugar is probably 150 or so...my A1C at my last visit was 6.7 (and that was up from before). Although I have notice that when I have a food intolerance response, my blood sugar tends to go up and I have some trouble getting it down again

My last A1c(11/2012) was 6.0 (range: 4.8-5.6%). Optimal is less than 7.0%. Blood glucose was 108 (lab,range: 65-99 mg/dL).

One typical day, my numbers were 99, 92, 95, 99, 87, 90 with home glucose meter. If I add 14 points( the difference between home/lab results) to each value, it supports the lab result of 108. Consumed only 30 grams sugar. Cann't get mine down either. My PCP said to go sugarless. Are you?

You might consider using cinnamon, if you can tolerate spices. It is known to maintain a healthy blood sugar level. I would try cinnamon but need to err the side of caution since I

have AR/GERD. Spices, caffeine, etc need to be avoided. When my peptic duodenitis heals up, I might try this out on a limited basis. If fasting (am) blood glucose drops to 70, perhaps I'll feel better too. Dry mouth always.

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Those are very good blood sugars! I will tell you, if that was an average day for me, I would be ecstatic...but I also suspect that that is why I'm diabetic, haha! For example, my waking blood sugar was 207...then 185...then 224...,then 145 before lunch. I will say this is a higher day than most...I have an insulin pump and I need to change the site soon.

I have heard from so many people regarding cinnamon...and I love cinnamon but I'm not sure yet how my blood sugar reacts to it...I need to do a little more research.

A fasting blood sugar below 70 makes me shaky and miserable, lol...now if I wake up at 90, I am very happy :)

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I do not go sugarless, Opa. My endocrinologist has always preached not to avoid foods because by avoiding foods, you will naturally be more drawn to those foods and may be prone to overindulge. That being said, I am not a sugar-a-holic, never have been. What I am trying to do lately is go low-carb...and that has led to good results for me. I am trying to get tighter control right now..,

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............and that has led to good results for me. I am trying to get tighter control right now..,

Make progress, become well and stay well.

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Me too, I went "overboard" with chocolate and balsam vineagrette. My GI Doc put me on Omeprazole, 40mg/1daily. It's starting to help.

He told me to take 1/day for the REST OF MY LIFE. :unsure: I read that is not good therapy to take long term. To much PPI's can cause an overgrowth of clostridium difficle and other bad bugs in the stomach and small intestines. Other things like pneumonia, hip fractures, malabsorption of vitamins & minerals. As a student nurse, what do think?

My best wishes for nursing school and good health to you.

While I know PPI's are effective, you definitely dont want to go developing c-diff. I've seen some cases of that in the hospital and it gets pretty nasty. Not sure if this will work, but maybe talk to your doctor about taking extra probiotics to help maintain the healthy flora in the intestines? C-diff develops when antibiotics or PPI's kill all of the bacteria in the intestines. Its possible that as you keep going gluten free, avoid those problem foods, dont eat right before you go to bed, you may be able to wean yourself off of the PPI's and just use those natural preventative measures. I hope you feel better!!

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Wow, you are way up there!

I hear you on ignoring symptoms! That is the story of my life! I was telling people for 8 months I thought I had diabetes and no one listened to me until a routine blood test showed I had a blood sugar of 420 and an A1C of 14.3. Now, they are not listening to me for other reasons...if you find a good doctor, hold on to them! They are few and far between that's for sure!! I am still holding out hope of finding a better doc.

Yes, I am way up there....lol! I'm sorry to hear that you went through all that. I understand your frustration. I've been complaining for two years about being allergic to almost everything and now it's foods upsetting my tummy. my body is sensitive it seems like to everything. anyway, i went to the dr today and explained my symptoms to him and i didn't even mention celiac and he did to my surprise! he said he was going to run bloodword to test for it. i'm not sure how accurate that is though?

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........Not sure if this will work, but maybe talk to your doctor about taking extra probiotics to help maintain the healthy flora in the intestines? C-diff develops when antibiotics or PPI's kill all of the bacteria in the intestines.

I am going to ask the Doc to cut back Rx to 20mg/day(from 40). Its to strong, stomach ache.

Something Doctor's never tell you is that long term therapy(20mg/day) with omeprazole will also develop fundic gland polyps within 1-5 years. Two years avg. Ref: Am J Gastroenterol 1997 Oct, 92(10); 1858-60.

The patient information leaflet (Mylan Pharma) does not list fundic gland polyps as a long term side effect either. Just possible fractures of the hip,wrist, or spine.

I've been using PPI's for five years (off/on) and my recent pathology report(Dec,2012) did note "early feature of fundic gland polyps" found.

I will definately wean myself off this Rx. asap.

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Hi!

I'm 31 years old and just joined the board. I have Type 1 Diabetes and am pre-diagnosis but will be having an endoscopy soon so hopefully will know more. My husband and I live in Middlesex County in NJ but I have recently moved to NJ and am looking for people like me to talk to. My husband has no food allergies or issues to speak of, so it's just me. Kind of gets isolating from time to time particularly when I'm dealing with symptoms that people may be able to sympathize with but cannot truly empathize because they have no similar issues. Would just be good to talk to someone while I am waiting for more information...

Hi Sarah,

Welcome to our wonderful Forum! I lived in NJ my entire life and moved to RI 4 years ago. I'll be in NJ this Saturday throwing a BD party for my DH & DS. I'm copying and pasting information on the party on the off chance that you and your hubby would like to join us. It's right outside of Princeton so it's about a half hour from you. I'd love to meet you. This Forum has been a life saver for me and the people I've met here are family to me. Here's the copy & paste:

Here's the C&P:<p>

Just wanted to let you know that the party is still on for Sat, 1/19 at 1PM. Below is site with directions.

http://romeosplainsboro.com

I have a dedicated gluten-free Zone set up. They have great gluten-free pizza & pasta. I'm crossing everything that you'll be able to make it. Since it's a buffet you can come as early and stay as late as you want. So far I'll be wearing fuchsia.

Much love,

Loey

P.S. For those of you who are lucky enough not to suffer from Celiac please keep all dishes, etc that contain gluten away from the designated Gluten Free Buffet. Thanks!!!! Cake is NOT gluten-free. :-(

Also, anyone else up for the drive please try and make it - I'd love to meet you.

Loey



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Thanks so much for the invite, Loey!! I certainly appreciate the thought! Wish I could come but the little girl I take care of is having a BD party the same day and I promised her I would come! Sorry to miss it though :(

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Out of curiosity, where in RI do you live? I know of some folks near URI...

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Out of curiosity, where in RI do you live? I know of some folks near URI...

Westerly. Right on the Connecticut border. Watch Hill is part of our community. We're in a nice development but no mansions.We're about 30 minutes from URI. My welcome mat is dusted off if you ever get up this way (or want to).

Loey

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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