emorgan816

Hi Scott!

Redbridge beer is the best one that is gluten-free and Tinkyada pasta is awesome. Schaar pasta is also really good. If you you love pasta you HAVE to go to Da Lucianos in River Grove. Here is the website Open Original Shared Link

Biaggi's also offers really good gluten-free pasta Open Original Shared Link. I'm a pasta snob and I have not been disappointed with these gluten-free versions and restaurants. I make lasagna, my own mac and cheese, pasta salads, and no one has been able to tell it from the glutenated pasta versions. You can buy the pasta at Jewel, Woodman's or Meijer's that I know of. I'm sure other stores have them but by me out here in the burbs those are the major chains that carry Tinkyada and Schaar's.

I would not get the biopsy either as insurance will say pre-existing. There was just an article about a 16 year old girl in Chicago whose insurance company went back in her files after her diagnosis and determined it was a pre-exisitng condition and canceled her insurance! Crazy.

Good luck! Please call me with any questions (my number is listed on my website link below) I run a Celiac Support Group and am more than happy to help you find a group close to you or answer any questions.

Elizabeth Secora

McHenry Celiac Support Group

www.mchenryceliacs.com

Our group is on its way! Please check out www.mchenryceliacs.com for meeting times/places and for more information.

Thansk!

Elizabeth Secora

McHenry Celiac Support Group

Sorry, forgot to add:

Yes, get the media involved, but I don't think you would want them at the first meeting. Maybe see if they will do an article about living with Celiac - that is how we got our group going. One of my members got the reporter to write an article on how her girls live day-to-day with Celiac. She contacted me about the support group so I talked about that for the article, and we also had a nutritionist talk to the report about the need to follow the diet and how difficult it is. I got many calls from the article and our group just about doubled in size!

I also have had the meeting date posted in the paper.

Elizabeth Secora

McHenry Celiac Support Group

I just started a group (first meeting was in September). I was worried about having info, handouts etc... too but none needed! It was so awesome to have a group of people all with Celiac exchanging places to shop, favorite foods, breads we like, cookies worth buying, etc... We are meeting again this month at a local pizza place that has a gluten-free pizza and everyone is so excited just to be meeting other Celiacs! Don't worry about scheduling every minute of your meeting, these first couple I'm sure will just be everyone finding out where they eat, what they eat, what foods are worth buying and what not to waste your money on and just venting that the meeting will just fly by. Maybe ask the group what sort of information they may want in the future, do they want speakers, nutritionists, or any other people to maybe speak at a meeting? These are things you can figure out as you go along.

I know for me and my group we are just excited to talk to each other about our struggles and our triumphs. I have been doing an email group for over a year now and about 1/2 now are attending the meetings (some are just too far away to attend). I would just email out recipes or into I received from CDF. I now have a newsletter that I put out each month and I'm working on a website too.

Our local hospital has no clue about Celiac, but that doesn't mean you can't see if you can hold a meeting there! Maybe educate a couple people in the process. Does your library have meeting rooms? How about a restaurant who might offer some gluten-free food.

The first meeting I had was at my house and people brought a gluten-free treat to pass. We had brownies, cookies, chips and dip and banana bread and everyone was so excited to be able to eat everything on the table!! The kids were REALLY excited that they could eat all the cookies and brownies This was such a fun way for all of us to meet and since it was in my home we didn't have to worry about being too loud or getting kicked out if the meeting ran too long.

For me, I just felt the first meeting we should have a place we all felt secure in the food and no distractions, and a place we all felt safe in talking about Celiac. I know some of the discussion got into who gets what symptoms so to have that discussion in a restaurant would have been highly inappropriate

It is really up to you what you want to do and where you want to have it. I will say that everyone will just be so excited that there is a group and a place to vent that they really won't care if you have handouts or not! All of that can come in time, but for now I think the conversation will certainly be flowing without you having to have it planned out.

Good luck and I think it is awesome that you are doing this!!

Elizabeth Secora

McHenry Celiac Support Group

PS: Maybe your gdad could be your first speaker and get more into the medical aspect of Celiac and what it does to our bodies if we don't remain gluten-free. Many Celiacs go off the diet because they find it too hard.

My parents volunteer at a food bank and I asked about gluten-free items. I was told that no one looks at the packages when they bag them up to deliver them to the needy - they just throw the stuff into a bag and go. So, my gluten-free items are just going to anyone and not to those who may need gluten-free items.

I am starting a Celiac group for the McHenry, Illinois area. Our first meeting will be on Thursday, September 24, 2009 @ 7PM in McHenry, IL.

If interested in attending please email me: emorgan816 at comcast.net or respond to this thread.

If you email me directly please put Celiac Meeting in the subject line so I don't think your email is SPAM.

Thanks!

Elizabeth Secora

Gluten Free Since March 2007

Excellent advice. I'll take it.

But I thought Bob's red mill oats were okay. I don't need to be eating oats, I don't even care for them. It was for a cereal substitute.

The salsa thing was stupid. I realize that.

The doctor told me to look up a gluten free diet and do it. He told me to go to a dietician but after reading stories about them being uninformed, I didn't go. I did a lot of research but ignored the dairy stuff. Let's be honest, the gluten-free is enough to take in, then add dairy free? ha.

I did read in my celiac newsletter this month the Bob's Red Mill did just come out with gluten-free Oats - they are Rolled Oats and the Steel Cut Oats. They are new so I think the oats you are eating may not be totally gluten-free. Here is the link to their exciting news: Open Original Shared Link

Elizabeth Secora

"Within just a few months strictly gluten free the only things I am allergic to now is a few perfumes, cat spit and my yew bushes when they bloom."

How do they test for "cat spit" ?! That cracked me up for some reason

Elizabeth Secora

Here is a good link to read up on probiotics. Open Original Shared Link

Here is an article on pro- and prebiotocs: Open Original Shared Link

I am on them - but I am 41 years old and under a doctor's supervision (an allergist). So, I would have no idea about putting children on them. I would talk to a doctor about that!

My doctor put me on a whole regiment of supplements to help me heal my digestive tract and it has helped me tremendously. Not only with my digestion but also with my energy level. But, I would not start any regiment without first consulting with a doctor or a nutritionist. Especially on children. You might want to do a lot of research on your own as to the different supplements and any side effects there may be in children before you start taking them. This would also help you to have a list of questions to ask your doctor about the supplements. I would also discuss any potential side effects with any current medication anyone may be on.

I have talked to several different doctors and nutritionists over the past year and all of them have spoken highly of probiotics and also of digestive enzymes. The prebiotics I have not heard too much about and I have no personal experience with them. Maybe someone else in the forum can share their experience with prebiotics.

The probiotics my doctor put me on are Florastor and Ortho Biotic. I am also on Ortho Molecular's Digestive Enzyme.

Elizabeth Secora

gluten-free since March 2007

There are two opposing sides to this one, but everybody is different. I know people who are very sensitive to gluten in make up, shampoo, lotions, bath soaps, etc... but I also know many who are not. Personally, I can not use products that contain gluten as I break out in a red itchy rash. When I use shampoo, conditioners, makeup or hairspray with gluten it causes my head and face to turn beet read and get hot (feels like I have a high fever). But, many celiacs do not react at all to these products! We are all different.

The obvious things - toothpaste, mouth wash, lipsticks, lip moisturizes should for sure be eliminated (anything you would certainly digest.) Hand lotions, personally, I would have gluten-free as you might put your fingers in or near your mouth or pickup food with your hands and eat it. If body lotion doesn't bother you, as long as you wash your hands after putting it on, should be OK. Some say shampoo that is gluten-free should be used since you might touch your hair during the day and then put your fingers in your mouth or touch food. I do not know if there is any scientific evidence to prove that this happens or not, but it is something to at least think about.

In the end, it is really up to you what you want to do! I just pay attention to what my body is telling me - if I react to something I stop using it, if I don't react I keep using it.

Elizabeth Secora

gluten-free since March 2007

I have only wonderful things to say about holistic medicine - the number one reason is that they seem to understand that in order to treat a patient they have to listen to them! We've all been thru that with our doctors.

After finally getting someone to diagnose me I was told "Yes, you have celiac. Come back in 3 months." And left me on my own. No explanation, no direction as to what I was supposed to do - nothing. I called up my "voodoo" doctor in tears and he got me in that day. He put me on a regiment of supplements which helped me tremendously, he sat with me and explained what celiac is and what I should eat and what I should avoid and he did all of this without making me feel stupid! That was something NO ONE in the "normal" medical community has ever done for me. He also explained that I may also have other food allergies and to not be surprised if other foods will become eliminated from my diet. So far only lactose has had to be eliminated. The supplements have certainly helped.

I am also seeing a naprapath for my fibromylgia (diagnosed June 2007) and he is also very big on the listening skills! Again, he sat with me for about 1/2 hour and explained what FM is and what he does to help FM patients and what I could expect from his treatment. He is also familiar with celiac, as one of his office staff has it.

So I would say go for the holistic approach - they seem to have a more open mind than "western medicine" doctors and certainly more caring!

Elizabeth Secora

gluten-free since March 2007

I'm leaning towards find a new GI doctor! We do need to have blood work done once every year to make sure our diets are remaining gluten-free, so I would at least go ahead and get that done (especially if the last time was 4 years ago). But for him to just bluntly state you have IBS is insane - isnt that just undiagnosed celiac anyways!? Why would he not feel this was a reaction to gluten, or perhaps some other food intolerance?

If you are not comfortable with this new doctor then you need to be an advocate for your own health and find a new one. That is the one thing I've learned thru this whole process - we need to speak up and not be afraid to fire our doctors.

Good luck!

Elizabeth Secora

gluten-free since March 2007

I'm new to this Celiac too - diagnosed in March. That is why I'm starting a support group, there is nothing out there in our area!

Elizabeth

Natural flavoring should be OK in name brand items (according to the Celiac Foundation). It is the off brands you need to be careful of. But to be sure I would call the manufacturer.

Caramel coloring may or may not - again I would call the manufacturer on this one.

Soy Sauce you need to be aware of - most contain wheat. Again, call the manufacturer.

Maltodextrin and modified starch should be OK if product is made in US.

If I'm unsure about a product I don't eat it until I check with the manufacturer to make sure it is gluten/wheat free. I keep a binder of the majors and keep their gluten free lists in there. Many have gluten-free lists on their websites or you can check their ingredients online. But beware, as ingredients change what once was safe may now have gluten/wheat in it. I know Hersheys does not have a gluten-free list anymore - they say to read the ingredients on the packaging since ingredients change (at least that is what they told me 2 months ago!)

Elizabeth Secora

I have muscle pain all the time. I was also diagnosed with Fibromyalgia along with Celiac. I have pain all over my body. There are specific trigger points the doctor can check to see if you have this. Stretching helps and so does exercise. My problem is when I exercise I hurt more - I haven't gotten over that hump yet! So, I don't exercise often enough. Message helps to relieve the muscle tension too.

Check out Open Original Shared Link for more information.

Also, Open Original Shared Link

Elizabeth Secora

Hello all! I am starting a support group in McHenry, IL. I am tired of trying to find information on my own - I am amazed at how little support there is out there for gluten-free people! It would be wonderful to be able to share information, share our experiences and share our frustrations.

Anyone interested please contact me at emorgan816@comcast.net (Please put Celiac Support Group in the subject so I don't delete your email!)

Elizabeth Secora

I'm in McHenry too. Did you start a group or did you find one yet?

Elizabeth

I'm with ya on what to buy at the grocery! I was in tears the first time I went shopping - gluten in everything! I'm new to this too (end of March).

Now I go with fresh fruits and veggies. From what I can gather, the more you can stay away from anything "processed" the better off you will be. I get fresh carrots, strawberries, grapes, corn, apples, broccoli, asparagus, bananas and lettuce at each trip to the store - Nothing Canned at all! Meats I get turkey and pork - and to splurge sometimes I get Johnsonville Regular Brats. But I haven't found a gluten-free bun yet for the brats so those are few and far between.

I would suggest doing your homework first before buying anything that is not fresh (unprocessed).

I picked up Gluten-Free for Dummies and that really helped me out. I do not eat anything with "artificial flavoring" unless I check it out first. I had a set back drinking some flavored water - ended up in the hospital - so now I read labels, look stuff up and carry around my 3-ring binder with manufactorer's lists so I know what is safe and what isn't. It is getting easier now - I know what to avoid and what is safe.

Also avoid anything that says it is manufactured on machinery that also processes wheat...I had some nuts that made me horribly sick - I didn't even think about how they were processed! From now on I'm getting the nuts in the shell and shelling them myself. Better safe than sorry!

My new motto is: "When in doubt, Go without!"

Elizabeth

I've ordered bread and pasta from kinnikinnick foods online. They even have a gluten free version of the Oreo (chocolate and vanilla). The stores by me are very lacking in selection too. Kinnikinnick does charge $10 for shipping, so I usually stock up when I order. Their donuts are not bad either.

Elizabeth

I'm sorry to hear he is not feeling better. Did you also cut out dairy and sugar? I would find an allergist and take him there. I went to one and discovered I'm allergic to many things and once I eliminated them I am starting to feel much better. Dairy and sugar are the two major ones I eliminated - but from what I understand dairy intolerance goes along with Celiac (I was diagnosed end of March and still learning about this diesease)

I do cheat on the no-sugar (I have a huge sweet tooth!) When I eat sugar I get bloated and have abdomin pain - no throwing up. When I have the dairy tho I sometimes get sick from that.

I hope you can narrow it down - you may have to gradually add/subtract things from his diet to really get a handle on what is making him ill. But I would find a good allergist for him. As you mentioned, it could be environmental (since you are remodeling).

Good luck!

Elizabeth

I'm now on the probiotics and they really make a big difference. I also use the digestive enzymes (I take one whenever I eat anything). The brand my doctor recommended was Ortho Molecular - it does not need to be kept in the fridge like some probiotics do. He's also got me on OrthoMega (fish oil), Floristor, Vitamin E, Fiber and calcium.

Elizabeth

Emily,

I found that my regular doctor did not prescribe any supplements for me. It was go gluten-free and come back in 6-8 weeks. Well, I took matters into my own hands and went to a holistic doctor that specializes in allergies and he put me on probiotics, digestive enzymes, Vitamins and a powder drink - all to help boost my immune system and help my digestive tract heal. What a HUGE difference this made. I would talk to someone about getting you on some sort of regiment of vitamins and/or supplements to help you out. I have also found out that I need to cut out dairy (this disease really bites!) I had an episode after eating some ice-cream (yes, it was gluten-free - I checked with the manufacturer) so now no dairy.

Good luck with your follow up! If you feel that you need to have another endoscopy I would do that. You know your own body. If you are feeling better maybe tell him that, ask about supplements to aid you in your digestion and the healing process in your instestines and then schedule another appointment for another 6 weeks. If at that time you are not better than I would do the endoscopy. There could be something else going on.

You really are the best judge of your body and your symptoms.

Good luck to you!

Elizabeth