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New In Baltimore, Md


cdog7

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cdog7 Contributor

Hello all, I'm still in the process of getting diagnosed, but I've pretty much figured out I have at least *some* issue with gluten. Since my mother has celiac, I'm just kind of expecting that's the deal.

I never believed my mother that I should be worried about having celiac disease, because up until relatively recently, I had no noticeable symptoms (aside from being the typical, underweight, undertall type Irish person). But in the past year that has changed with a vengeance!

I hear some people develop symptoms after something traumatic like a car accident


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Ursa Major Collaborator

Hi Carolyn and welcome to these boards. It sure sounds like you've had gluten intolerance all along, but with the divorce stress it turned into full-blown celiac disease.

You realize that you will need to keep eating lots of gluten in order to get positive tests, right? Because if you are trying the gluten-free diet before testing, you'll more likely than not end up with false negative test results.

Of course, with celiac disease being genetic, and your mother having it, it is pretty much a given that with those symptoms you have it as well.

Too many of us have been told over the years it is 'all in our heads' and being dismissed by doctors. Good for you that you don't believe that nonsense and switch doctors instead.

In the end, if everything else fails, you can just decide to put yourself on the gluten-free diet, since no doctor can tell you what you should or shouldn't eat. Many of us here are self diagnosed and are so much better without gluten.

num1habsfan Rising Star

You should be able to find a lot of stuff in Baltimore, if you didn't already know that haha. I have an internet from there and a couple times she sent me little gluten-free things in the mail!! I just don't know exactly where she found these things, I think a lot of it just in the grocery stores.

~ Lisa ~

gdobson Explorer

Hi Carolyn,

Welcome. I am sorry you have had such a rough time.

Just a bit of a side note, the Center for Celiac Research located there in Baltimore has an annual Celiac 5k walk/run- This year it will be Sunday, May 4th. They have tons of info and vendors present there as well as celiac researchers and specialists.

We plan to be there - we had a great time last year.

Best of luck.

Gina

cdog7 Contributor
Hi Carolyn,

Welcome. I am sorry you have had such a rough time.

Just a bit of a side note, the Center for Celiac Research located there in Baltimore has an annual Celiac 5k walk/run- This year it will be Sunday, May 4th. They have tons of info and vendors present there as well as celiac researchers and specialists.

We plan to be there - we had a great time last year.

Best of luck.

Gina

Hi Gina, thanks! I recently discovered that, and plan to go, myself! I think my mom might come too, we'll see. I guess this is a pretty good town to be in if you happen to have celiac disease!

cdog7 Contributor
You realize that you will need to keep eating lots of gluten in order to get positive tests, right? Because if you are trying the gluten-free diet before testing, you'll more likely than not end up with false negative test results.....In the end, if everything else fails, you can just decide to put yourself on the gluten-free diet, since no doctor can tell you what you should or shouldn't eat. Many of us here are self diagnosed and are so much better without gluten.

Hi Ursa Major, thanks for the welcome! Yes, I'm still 'glutening' it up for now, though it gets harder to do. I used to love beer so much! But now it just feels like I'm drinking battery acid and starts turning my stomach fast. Pasta, too. I'm so glad there's gluten-free alternatives for both now! I'm trying to eat at least one gluten meal a day now, it's just not pleasant to eat anymore.

And yep, if all my tests come back negative, I'm fine with just going gluten-free on my own! We'll see what happens with that.

blueeyedmanda Community Regular

Hi Carolyn and Welcome to the Board

I am in the Harrisburg PA area. I have been to Baltimore a few times, my husband sees an oncologist at John Hopkins. If you get a chance, check out Whole Foods, they have a bakery which does some great gluten free items. I am not real sure of any other places in your area.

If you take a drive up I-83 to the Hunt Valley exit you can go to Wegmans which is great for gluten free shopping.


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  • 2 weeks later...
ThatlldoGyp Rookie

Hi, welcome to the site! I am also grateful for this site, there is so much info and everyone is so kind and understanding...

I am so glad you are pushing and pushing for a diagnosis. Sadly, it usually takes years and years for people to get diagnosed... and I suspect that almost everyone here was told they were depressed or something like that when the Dr.'s would not or could not really address our physical symptoms. I was told I was depressed and had an eating disorder and had pill seeking behavior myself. I RAN from that Dr. as well. Anyway, any time a Dr. acts like a know it all, or is rude to you, or suggests you have mental issues and not physical, or won't refer you to someone who can help you, RUN! The fact that your mom has Celiac should have set off a round of the usual bloodwork tests at the first appt. It is, after all , a genetically linked disease! I suggest that you bring in an article or two to your next Dr. visit, and have the specific tests that you want run (blood work) on a list. If they refuse to do the testing, ask for a GI referal at the least. I had to fight to be tested myself, as did many of us! You are not alone in that frustration! Stick to your guns and get the bloodwork or a referral at the very least! Good luck and I hope you improve on the gluten-free diet.

MySuicidalTurtle Enthusiast

Baltimore is great! The surrounding cities have some good gluten-free things to offer, too. CHeck out Sweet Sin's baked goods and the food at Great Sage. Downtown Baltimore has a few restaurants with gluten-free menus, too. Good luck!

  • 3 weeks later...
wwebby Apprentice

Hi Carolyn,

I'm moving to Baltimore in July, so any tips you have about the area would be great. Good luck with everything and keep us posted.

Laura

cdog7 Contributor
Hi Carolyn,

I'm moving to Baltimore in July, so any tips you have about the area would be great. Good luck with everything and keep us posted.

Laura

Hi Laura,

One great thing about this area is the supermarkets -- we have several Whole Foods markets for instance, and a couple Trader Joe's, both of which have great gluten-free selection. And now there's a Wegman's, which I hear is possibly better! I'm still figuring out the eating-out possibilities, but I do know we have lots of sushi joints, and a P.F. Chang's downtown (which has an extensive gluten-free menu). As far as doctors go, we have a Center for Celiac Research at the University of Maryland in Baltimore, which is pretty awesome. In all, I gather this is a halfway decent place to end up in if you have celiac. :) Maybe I'll see you around!

Carolyn

  • 2 weeks later...
razzlephrat Newbie

Hello and welcome! I'm from Baltimore (Hampden) too! You should check out One World Cafe and Lillit (in Bethesda) for amazing gluten-free pizza and cakes, just an FYI! :D

  • 1 month later...
DarlingMedusa Newbie
Hi Carolyn,

I'm moving to Baltimore in July, so any tips you have about the area would be great. Good luck with everything and keep us posted.

Laura

Hey Carolyn and Laura,

I'm originally from baltimore- this is the first time i've been back since i was Dx in Nov 07. I've had mixed luck. lots of places downtown/dc metro, but not in the areas where i live in baltimore county. try bonefish grill- a chain but good, and theres a new place in owings mills called the "artful gourmet bistro"

they do like, real food entrees. they dont have a gluten-free kitchen, but one of their waiters (mike) is super great with me and my needs- their menu is EASILY accomodated for celiacs. i had a tuna steak on mashed potatoes with asparagus and it was amazing. i cant guarentee no contamination because i never got stomach symptoms, but mike said he checked in on the kitchen and they were informed and understanding and accomodating.

good luck!

Annie O Newbie

I am in the Baltimore area, and have a business at Camden Yards where the Orioles play. I run Boog's BBQ and am happy to tell you everything but the roll is gluten free! ( Boog's is voted best ballpark food every year by ESPN, Sports Illistrated, and Playboy) I have trained my managers about cross contamination. If you come to a game, we'd be happy to help you. We are lucky to have Whole Food's, Trader Joe's and David's natural Markets. I still get nervous eating at most restaurants, I'm Gluten-free Casein-free so it is a little harder. My sister is gluten-free only. Hope to see some of you at a game.

Anne

kevsmom Contributor

Carolyn,

Welcome - I'm glad you found us! :rolleyes:

Cindy (From Westminster - North of Baltimore)

  • 7 months later...
rubyred Apprentice

I'm from Baltimore! I live in Canton and am planning on running the 5k this year...I'm so excited!! I'm new to the gluten-free life so I didn't run in the previous years. I ate at Red Star in Fells recently and they were very accomodating. I had a salad with salmon (balsamic dressing). They didn't put any sauce or anything on the salmon. It was really good though. I'm also not exremely sensitive, so I have it a little easier.

Anyway, just saying hi to all the fellow Baltimore peeps!! :D

mamaesq Rookie

And I am in Manchester, also in Carroll County! I too hope to run in the 5K this year!!

  • 2 weeks later...
mamaw Community Regular

Hi

I will be in Hunt Valley for three days on a business trip.I read all the threads . Can anyone tell me what is close to the Hunt Valley area for gluten-free . I love pizza, American Fare & Italian foods... any idea on good bakeries & besides Wegman's any good shopping. Can one buy a Noah's gluten-free soft pretzel around this area?

I'm sure traffic is horrible so after five I'm not sure how far we can get.

Any info will be appreciated. thanks

mamaw

lbd Rookie

There is an Outback right by the Wegman's in Hunt Valley. I have eaten at Jesse Wong's in the same area with success. Wegman's has signs all over proclaiming that their food may be contaminated with allergens, but I have eaten there as well with no problems but I am not overly sensitive. There is a Chipotle there as well. There is a japanese restaurant across York Road (near the Giant) called Greenleaf, that has a nice sushi selection.

lbd

mamaw Community Regular

Thank you

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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