Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Any One Is Ohio?


casnco

Recommended Posts

casnco Enthusiast

Hi, Im Debbie and live in central Ohio. I just noticed my typo and tried to edit it. It should say, "Anyone in Ohio?" My bad.

I have been tested positive for DH and intestinal biopsey was negative. I had been gluten-free for 3 months before the biopsy. I told the doc. I wouldn't go back on gluten and we decided it would be good to see if there was any perminant damage because I was still having symptoms.

I have lived as gluten free as possible for a year and a half. I keep getting gluten in cross contamination. It sucks. I would really like to cheat once but if I continue to have symptoms I can't even do that. Bummer.

I would really like to meet other people in Ohio who are "blessed" with this lifestyle.

Look forward to hearing from you.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rmmadden Contributor

Debbie,

Hello fello Buckeye. I live just outside of Cleveland and have been gluten-free for 14-months now. I know the frustrations involved with being Celiac but, it's better than the alternative. I just had a 1-year check-up (okay, a 14-month check-up) and have shown improvement on all my Celiac numbers so it does give me a ray of hope that someday I will fell "normal" again.

Best of Luck!

Cleveland Bob B)

teebs in WV Apprentice

Hey guys - I'm not in Ohio, but just across the river. I was born and raised in Ohio and moved to WV in 1995.

My celiac dx was done at Riverside in Columbus - your neck of the woods casnco!

casnco Enthusiast

Tracy, Bob

Nice to meet you. I grew up near Cleveland. Kind of. That is where we all say we are from if someone asks. A small town called Homeworth. Really it is closer to Canton/Akron, but most people out of state really don't know where Canton/Akron are anyway.

Tracy, not real familiar with WV. Why did you move there?

Are you both Celiac primarily? I ask because I am blessed with Dermititis Herpiformosis also. Some people talk about cheating on the gluten-free diet. I am sensitive enough that one accidental glutening and I break out and sometimes even spend a day or two in bed. Oh to cheat. I had a dream about pizza last night. And I have been gluten-free for 18 months! You think I would be over that.

I have found some great products though. I have learned to cook like a chef but still like to go out to eat. Columbus is great for resturants that understand my need for gluten-free food. Wish I felt comfortable traveling. Sometimes I let my husband do the talking at a resturant because I get so frustrated.

Sorry for the rant. Basically I think we are pretty lucky. There are worse allergies.

If either of you have stories to share, feel free.

Debbie

teebs in WV Apprentice

Hi Debbie. I literally live just across the Ohio River in WV. (I am right across the river from Marietta.) So when I moved, I only moved about a mile, so it wasn't really a relocation.

I also have DH - I wouldn't even have known that I also had celiac disease if I hadn't got DH. My derm is who diagnosed me. My GP was in denial even after the derm did bloodwork and a skin biopsy, so he sent me to a GI at Riverside who did an endoscopy and biopsy. Before doing my biopsy the GI said he was sure that I had celiac disease by just reviewing my records.

I posted a reply to one of your other posts about a good doctor in Columbus. I have the details and will post them on that thread, just in case there is anyone else out there in the vicinity that is looking for a GI.

It is great to have someone nearby to talk to! I know of one other person in my area that has been diagnosed, but I have never talked to here (she is the step-mother of my son's girlfriend).

rmmadden Contributor

Debbie/Tracy,

I (luckily) only have celiac disease at this point. I just had my 1-year check-up done and all my numbers look good (Knock-on-Wood). It's not been an easy year but I do feel encouraged that all my sacrificing has helped.

Tracy--I went to Ohio University and have friends in Pomeroy (right along the Ohio River).......Beautiful country! How long have you been diagnosed w/ celiac disease?

Cleveland Bob B)

4tomorrow Apprentice

I live in central Ohio. I'm about 40 min east of Columbus.

I haven't been diagnosed yet. I'm waiting on my enterolab kit. I've had negative experience with my GI, so I'm taking matters into my own hands.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



wolfie Enthusiast

I am also in Columbus and have only been gluten free for 3.5 weeks. I haven't been "diagnosed" by the gold standard, but had the positive bloodwork and dietery response. I wish that I wouldn't have gone gluten-free before seeing the GI, but didn't know any better. I can't fathom eating gluten again to rule in Celiac, but not rule it out. I may order the tests from Enterolab instead. My PCP and GI did agree though that if I felt better that it was fine to just continue gluten-free, as that is the same end result.

I was really stressed at first, but am finding it easier. The food is kinda $$, but I am trying to eat foods that are naturally gluten-free and make a lot from scratch.

I do miss the convenience of my old diet a lot, but not the pain and misery. :)

Kim

Hi, Im Debbie and live in central Ohio. I just noticed my typo and tried to edit it. It should say, "Anyone in Ohio?" My bad.

I have been tested positive for DH and intestinal biopsey was negative. I had been gluten-free for 3 months before the biopsy. I told the doc. I wouldn't go back on gluten and we decided it would be good to see if there was any perminant damage because I was still having symptoms.

I have lived as gluten free as possible for a year and a half. I keep getting gluten in cross contamination. It sucks. I would really like to cheat once but if I continue to have symptoms I can't even do that. Bummer.

I would really like to meet other people in Ohio who are "blessed" with this lifestyle.

Look forward to hearing from you.

teebs in WV Apprentice

Bob,

I am about 40 minutes from OU. My fiance's daughter is planning on going there next year. I was diagnosed in November, so I am still adjusting to all of this. The good news is that I think it is getting easier, and my bloodwork already is showing improvement.

Everyone else - this is great that there are so many of us! (I am a former buckeye and since I am just across the Ohio River I am including myself in with the rest of you!)

I posted info on the GI that did my endoscopy on another thread for those of you who are looking for a GI in the Columbus area.

Guest Robbin

Hi Debbie, Just saw your post and had to say hi to an Ohioan. I was born and raised in OH, but have been moving around (hubby's job) for the past 11 years. Now in Northern VA. Loving VA, but missing Ohio. My husband born and raised in Cleveland area and I am from a small town near Wooster. I hope you find the support and doctor you need there, because I sure haven't felt that way here, although still new to all this. I am going to change dr., soon or else go the enterolab route.

Miss those gorgeous OH autumns!!! Not the snow, though!!!Best Wishes & God Bless!! :D

VegasCeliacBuckeye Collaborator

Deb,

I lived in C-bus for 7 years...

they have a good support group there called the "Gluten-Free Gang" -- they were pretty organized when I was there...

If you ever need a good meal, go to the Columbus fish market and get one of the fresh fish or steaks (grilled).

the mashed potatoes are gluten-free and ask them to give you some steamed spinach!! their house salad is also gluten-free -- no croutons -- Dressing on the side -- gotta be safe about ordering salads because of the the bowls that have the salad/croutons tossed in them before yours!!)

hope this helps!

Bronco

  • 1 year later...
tannerkathy Newbie

Hi all, I am from Wayne county, ohio? Not sure if anyone knows where that is but I think I am the only one around here that has celiac. I am a newbie but this is a farming county. Can ANYONE give me any help. Thanks :(

ginghamkim Apprentice

Hi Kathy!

I'm in Warren County (soon to move to a farm in Clinton County) in Southwest Ohio. Wow, advice? I don't feel qualified or experienced enough, but I can help to answer any questions you might have. I still am learning so much. This forum is outstanding and really has helped me.

I've been gluten-free since Christmas 2006. I still have my ups and downs, but went a full 26 days without any problems. I'm also dairy and soy free.

Let's keep this thread open...it looks like it is from 2006.

Cheers!

Kim

mamaw Community Regular

Hi Gang

Just a reminder that the Children's Hospital Confernce is coming up in Nov.07

They are registering folks now. It is their 20th year anniversary. $35.00 to register ...I love the vendors!!!!

mamaw

tannerkathy Newbie

Thanks so much for your response. I can use any sites you may no of that knows what there talking about. lol maybe resterants that is in the area. Thank you again

VegasCeliacBuckeye Collaborator

Mamaw,

I will have to remind my mother of this conference. She was recently diagnosed and lives in Dayton (Beavercreek).

Im sure she will attend.

Sadly, I will be in Columbus the following weekend for the Illinois game.

mamaw Community Regular

Hi Broncobux

sorry about your Mom being dx'd....I do like the conference but I love that I can buy so many things right there....

If she needs any help please give her my name I'd be glad to give her a hand. She probably knows already with you being gluten-free........

wish you could make-it!!!

mamaw

ginghamkim Apprentice
Thanks so much for your response. I can use any sites you may no of that knows what there talking about. lol maybe resterants that is in the area. Thank you again

Kathy,

You asked about sites and restaurants.

Regarding sites, I use this forum alot for recipes and to see if a ingredient or product really is gluten-free. Another site I use for recipes is Open Original Shared Link and foodnetwork.com. There is a wheat-free section on the elise section. If you choose to eat naturally gluten-free food, you'll be ok. Processed food can be tricky and have alot of hidden stuff in it that will drive you crazy.

Regarding restaurants....I only go to Carrabba's. I need to venture out more. I know you can go to Wendy's and order an uncut baked potatoe, but that is about as appealing as eating a 2x4 while your husband devours a grilled chicken sandwich...venting. :P I've also heard that bone fish grill and outback steak house has a gluten-free menu, but you must stay on top of the servers to make sure everything is correct.

Keep the questions coming!

Kim

  • 2 weeks later...
VegasCeliacBuckeye Collaborator

Mamaw,

My mom is interested in attending the conference. Feel free to contact her (she is a member on here now) - JudyRn.

What is the website for the conference?

BB

tannerkathy Newbie
Kathy,

You asked about sites and restaurants.

Regarding sites, I use this forum alot for recipes and to see if a ingredient or product really is gluten-free. Another site I use for recipes is Open Original Shared Link and foodnetwork.com. There is a wheat-free section on the elise section. If you choose to eat naturally gluten-free food, you'll be ok. Processed food can be tricky and have alot of hidden stuff in it that will drive you crazy.

Regarding restaurants....I only go to Carrabba's. I need to venture out more. I know you can go to Wendy's and order an uncut baked potatoe, but that is about as appealing as eating a 2x4 while your husband devours a grilled chicken sandwich...venting. :P I've also heard that bone fish grill and outback steak house has a gluten-free menu, but you must stay on top of the servers to make sure everything is correct.

Keep the questions coming!

Kim

tannerkathy Newbie

Hey Kim thanks for the info. I am REALLY confused ;) about all this. lol

  • 2 weeks later...
janicekelleher Newbie
Hi all, I am from Wayne county, ohio? Not sure if anyone knows where that is but I think I am the only one around here that has celiac. I am a newbie but this is a farming county. Can ANYONE give me any help. Thanks :(

Hi, I am from Stark County (Akron/Canton) area. My husband has Celiac, I may be of some help depending on what you need.

ginghamkim Apprentice
Hey Kim thanks for the info. I am REALLY confused ;) about all this. lol

Kathy,

Can you be more specific? If I can't answer a question there are many others who can. It's all very overwhelming at first and you can experience a mourning period of sadness/anger/resentment/adaptation. Sounds crazy, but it happens.

Do you need help with meal ideas? Snacks? Drinks? At first, I looked in my cabinet and thought there is nothing to eat! Everything was pasta, hamburger helper, processed food.

Let us know what you are confused about and someone here can offer assistance. Some doctors are helpful, but most aren't. And, every celiac has different symptoms, recovery time, and sensitivity levels. It can be a very daunting recovery....but there is hope.

Anyway, let us know.

Kim :D

LoriC Apprentice
Hi, Im Debbie and live in central Ohio. I just noticed my typo and tried to edit it. It should say, "Anyone in Ohio?" My bad.

I have been tested positive for DH and intestinal biopsey was negative. I had been gluten-free for 3 months before the biopsy. I told the doc. I wouldn't go back on gluten and we decided it would be good to see if there was any perminant damage because I was still having symptoms.

I have lived as gluten free as possible for a year and a half. I keep getting gluten in cross contamination. It sucks. I would really like to cheat once but if I continue to have symptoms I can't even do that. Bummer.

I would really like to meet other people in Ohio who are "blessed" with this lifestyle.

Look forward to hearing from you.

I was just recently diagnosed with DH by my dermatologist late August, so i'm really fresh to this stuff, needless to say i was floored when he told me what he was treating me for. I told my family doc, he seemed in disbelief, asked if i had a biopsy done of the rash, i said no he did a scrapping tho..which isn't the same i guess? so my family doc set me up with a gastro spec.

NOW heres the thing, almost 16 yrs ago i was diagnosed with IBS, since then i've had my upper and lower GI's, scopes done, no mention of celiacs..Do they automatically test for that? I"m really worried i've had this for a long time..i've had the rash for about 6months off and on, never really ever went away, but it would calm down with certain meds. I'm on dapsone now 100mg a day, but i also have bronchitis right now and feeling crappy, so i don't no if its the dapsone making me feel yucky or just that i'm sick. I'm also on a gluten free diet, which is not easy :( but i have really tried..My rash is going away, in some areas its gone.

What are the first tests they usually run to confirm diagnoses? is it a blood test first? Thanks for any help, Lori

PS most important thing i forgot to post: I"m from northeast ohio..near Youngstown area!!!!!!!

mamaw Community Regular

Hello Lori

I'm from Pa just across the border!!!! I come to Boardman alot, my chiropractor is at Southwestern Reserve.....

Tests for celiacs can be bloodwork, endo & colonoscopy & DNA testing for certain genes. I've had all done..... then there are test kits you can order on the net..

I shop in Canton & Columbus Oh alot. The Raisin Rack in Canton has a big gluten-free section...Also Kathy's Creations is in Alliance.

I will be at the Columbus Children's Hosp Conference in NOv. It is a good place to get much info & to buy the better products.... if you want to know more just send me a personal e-mail.....

This site is a good place to learn also plus we have a great recipe section. Smart group & good cooks live here!!!

mamaw

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,875
    • Most Online (within 30 mins)
      7,748

    Ruth Margaret
    Newest Member
    Ruth Margaret
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • pilber309
      Hello   I have been diagnosed Celiac for 14 yrs now and despite ups and downs I've never felt better in terms of what I was suffering pre diagnoses due to being G.F. The one feeling I cant seem to get rid of is a burning sensation in the very part of the small intestine where the villi is. I seem to be noticing it a lot more recently.  Has anyone had this or have any medical tips about what I can do about it. It doesn't hurt really its just irritating. 
    • xxnonamexx
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.