• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Any New Jersey Celiac's Out There?
0

Rate this topic

23 posts in this topic

Recommended Posts

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...

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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)?

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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...

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


......... 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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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 :)

Share this post


Link to post
Share on other sites

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..,

Share this post


Link to post
Share on other sites


Ads by Google:


............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.

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

........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.

Share this post


Link to post
Share on other sites

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



Share this post


Link to post
Share on other sites


Ads by Google:


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 :(

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,146
    • Total Posts
      939,918
  • Member Statistics

    • Total Members
      66,132
    • Most Online
      3,093

    Newest Member
    Whhyyy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old. I would be interested to know what your gi said and how your daughters doing now? xx
    • Please check the date on post, you just responded and tried talking to a person from 7 years ago. On consideration to the subject Poatoes are a huge flare factor for my UC and cause my blood sugar to sky rocket...I am not even diabetic but for some reason potatoes (hash browns) that I tried a few months ago with some eggs shot it up over 400. not even a control test with table sugar managed that.
    • Have you tried eliminating high glycemic foods? Fruits, added sugars, starchy grains, potatoes. etc? Also adding in slow digesting fibers and fats can prevent insulin spikes, MCT oil is also known to help and protein. Many find consuming nuts and seeds higher in fiber early on in the meal or before a meal can slow down insulin responses and prevent spikes. I always tend to eat a hand full of whole shell pumpkin seeds, hemp seeds, cocoa nibs, etc. while fixing my food, this gets me starting to feel fuller sooner, and seems to help in over all down the road. I know I had some references somewhere to these. I know I read somewhere about the antioxidants in in whole shell seeds like pumpkin and hemp also helped the body regulate insulin levels.
    • Dear AWOL Cast Iron Stomach, Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care? This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not  "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of  what is shameful is they and their colleagues missed you failed you. In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years ,  I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop. So many things explained it makes you experience a range of emotions. Grateful: Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis. All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove. Anger: Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this. Hurt: Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat. you are not over emotional -  you are suffering from neuro symptoms, you are not making this up for attention Sad & Guilty: Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop? You now have closure and know how and why you lost your first pregnancy. You now know why you were high risk, complications,  with your children in Pregnancy & Delivery that they couldn't be explained back then It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew,  that your Puppp rash was likely misdiagnosed DH It is not your fault none of it. Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept. Withdrawn: Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away.  Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
    • I know for certain gastritis  is one of the main reasons I had the scope. That and my EOE symptoms . If it wasn’t for those I would have never been diagnosed 
  • Upcoming Events