CMG

Thanks for the input - we have 4 days, so I plan to try them all!

I have a similar story, too, although my daughter did have the celiac blood tests done before going gluten free. They were negative.

She had dropped from 75th percentile on the growth charts at birth to 3rd percentile at her 3rd birthday. It wasn't until she was 4 1/2 that my sister suggested the gluten free diet. She was introverted, clingy, irritable, hyperactive, constant tummy aches for over two years, plus aches and pains throughout her body all the time.

After going gluten free, every symptom disappeared. After 1 1/2 years she is back up to 10th percentile. Every time she gets glutened we go back to irritable, hyperactive and complaints for about a week. I still sometimes questioned whether this was really because of gluten. What finally convinced me is that her permanent teeth now are coming in and they appear to have enamel defects - my understanding is that is common in celiac kids. I don't question that it's gluten anymore. My mom finally believes me, also because of the teeth. We have a new pediatrician because we moved. She and my GI agree that based on growth and teeth it probably is celiac.

(Working through this for my daughter is also how I determined that I am gluten intolerant/celiac; and probably because of where I live, I have doctors who get it. My doctors are all at Stanford.)

I will be spending a few days in Manhattan and am looking for kid-friendly gluten free options near our hotel, which is on W. 63rd. I know there are plenty of options throughout the city, but specifically need something for when we arrive w/ 2 tired children (ages 4 and 6) right around dinner time.

Thanks!

The following is a link to the recipe for my favorite gluten free bread from Gluten Free Girl. (I hope the link copies, I'm not very good at this!) It's also a favorite of the non-gluten-free members of my family -- they start eating it as soon as it comes out of the oven!

Open Original Shared Link

I have made a lot of gluten free bread from mixes and recipes. To me, this is by far the best. The recipe is long and intimidating at first; but, after making it a couple of times it's not a big deal. Usually, I make a double batch, slice it, and freeze it. Then I can just toast for sandwiches, breakfast, etc.

Also, I just got a bread machine and Annalise Robert's cookbook "Gluten Free Baking Classics for the Bread Machine". I have made several bread machine loaves using her recipes. All very quick, easy and great taste and texture. My non-gluten-free 4-year-old still refers to the Gluten Free Girl recipe as "the real bread", though.)

Good luck!

I find this to be the perfect thread to post this new info from The Gluten Doctors...a huge clinic in California.

I have always believed this to be true. As I have mentioned before, my family doctor in Michigan never mentioned celiac disease all those years I was so sick. Then my sister was diagnosed, and I went gluten free 3 months later. My PCP here says because of all my symptoms, and my neuropathy, he KNOWS I am celiac, no doubt in his mind. My neuro follows what Quest Lab said, I have the wrong genes for a diagnosis, yet he diagnosed me with sprue, and gluten ataxia, claiming my neuropathy was caused my nutritional deficiencies from gluten.

I am what I am, and I will always be gluten free, not a doubt in my mind. The tiniest amount triggers a reaction.

Thanks so much for the post on The Gluten Doctors! I live only about 20 minutes away from their practice and didn't know about it. I just made an appointment for myself so maybe I can get some validation on my self-diagnosis. I'll probably take my 6-year-old daughter in, too!

I have read/heard this with respect to both gliadin and casein (milk protein). I have not read scientific research, but first heard about the theory and studies from a developmental psychologist who evaluated my daughter for ADHD. Some doctors believe that this opiate effect is the reason so many with autism, aspergers and adhd respond positively to the Gluten-free Casein-free diet.

I agree with mushroom's comments, and also would recommend an alternative medicine doctor if you have access. I went to an alternative doctor 14 years ago, who diagnosed me with yeast syndrome. He put me on heavy duty anti-fungal meds and a yeast-free diet (which, as it turns out, was nearly gluten free). It was the healthiest time of my life. And also the first time a doctor had taken seriously my health issues. Like you, on paper and through standard medical tests I was the picture of health. Yet, I had migraines, chronic fatigue, muscle and joint pain, dizziness, fainting, dental problems, and the list goes on.

Do a search on "complementary medicine" for your area and you might find someone.

Good luck!

I was thin to begin with; not unhealthy but within range for my height. I gained about 10 pounds within the first 2 months gluten free. I assume, in part, because my body is absorbing nutrition better now. But also, I think a lot of gluten free baked goods contain more fat and less fiber than their gluten counterparts. Since I figured that out, I'm more conscious of portion control and am beginning -with great effort - to lose the weight that I gained.

Bell & Evans makes gluten free chicken fingers, which my girls both love. Try rice noodles / rice pasta instead of standard pasta. If he likes the ramen packets, try Thai Kitchen rice noodle bowls instead. Also gluten free mac and cheese - my girls favorite is the DeBoles brand. If there is a Trader Joes near you, the Trader Joes brand gluten-free mac and cheese actually is made by Annie's.

Bread is harder. I usually make my own, but the whole foods breads are pretty good. Whole foods also makes gluten-free cream biscuits that my kids really like. Once we made the transition to the gluten-free versions of things that they like, we were able to break the carb addition, too, and they eat a much more varied diet now.

Good luck!

I have been brining food to birthday parties for my daughter since she was a year old - first because of dairy allergy, now gluten, too. I have never checked with the party locations in advance. If anyone asks, I just tell them my daughter is allergic to dairy and wheat and therefore can't eat standard pizza.

I have been buying frozen gluten free pizza (I think you can get gluten free and dairy free), cook it before the party and bring it with us. That way she has pizza like everyone else. My daughter is now 6, and she does recognize that she doesn't feel well when she eats gluten. (Dairy seems to be less of a problem now.) At a recent party, the birthday girl's mom offered my daughter pizza and she responded "No, I have my own."

Just for the record, I also bake gluten free cupcakes and keep them individually wrapped in the freezer. Whenever we have a party, I just take one out the night before.

I read recently about companies using a salt-water solution to "plump" meat for packaging. It looks like there's no harm in it other than that you are paying a price per pound for meat when some of that weight actually is salt water.

Have you asked your doctor's office to put you on a waiting list for cancellations? They might end up getting you in sooner and then you won't have to worry about it for so long. I got lucky - when I went in to see my GI, they had had a cancellation of an endoscopy for the next day, so I got right in. (Not so lucky was that my biopsy was negative after having been gluten free for over a year and then doing a gluten challenge.)

Good luck, and try not to worry. It's really a quick procedure and you will be fine!

Ive never used Quinoa - I have seen it in the supermarket though. What kinds of things do you use it for and how do you cook it?

I think im just going to have to be more organised...eg. Make a big pot of soup and a loaf of gluten-free bread on sunday and freeze it in portions for the week...I think i'll also start cooking more at dinner, so I can have left overs the next day!

Thanks for all your help everyone! :-)

Cooking quinoa is very similar to cooking rice. You should rinse it first, or it can be bitter. Then just simmer in either water or broth for about 15 minutes. Add any seasonings you like and you have a great side dish.

I had the same issue. I gained 10 pounds in my first 2 months gluten free. I'm now realizing that gluten free baked goods are higher in fat and lower in fiber that their gluten counterparts.

I second the soup suggestion. There are lots of soups that are packed with vegetables and I always add beans for protein and fiber, even if the recipe doesn't call for them. Add some brown rice or brown rice pasta to make it a bit more filling. If you make a big pot, you'll have plenty for lunches for a week. Also, I've been doing lots of big salads this week with beans, chicken, tuna or eggs added for protein. Sunflower seeds also add protein and some crunch.

I'm seeing my weight start to creep back down as I focus on increasing veggies and proteins and reducing carbs - even if the carbs are rice and baked potatoes.

Quinoa is good, too. I use it as a substitute for couscous or orzo. It's more nutritious and tastes great!

I had the same questions, and my answer, too, is 100% gluten free.

I put my daughter on the gluten-free diet for intestinal symptoms (she was already CF because of milk sensitivity). Her physical symptoms improved quickly, but I also was stunned to see a significant improvement in her behavior. We were just beginning down the road of ADHD evaluation. After a year on the diet, I did exactly what you just suggested...let her have the pizza and cupcakes at the birthday parties. I didn't want her to be different from the other kids. She seemed fine afterwards. So we did it again, and again... There was never an "AHA" moment that this is harming her. But over months I noticed a gradual decline in her behavior until it was becoming unmanageable again. We went back to 100% gluten free and back to good behavior and focus. I have reviewed the issues with her teachers, she takes her lunch to school with her every day, and she takes gluten-free pizza and a gluten-free cupcake to every birthday party. Once you get into the routine it doesn't seem like so much work - just takes organization.

Her new doctor (we moved) does believe that she is celiac - based on dietary response, increased growth rate since going gluten-free, and we now know that she has the DQ2 gene.

Did you have your son tested for celiac before going gluten-free?

Let me know if you would like me to share some information about managing the birthday parties.

My daughter had the same issue when we put her on a gluten free diet. We had concerns about ADHD, but put her on gluten-free diet for intestinal issues. Intestinal problems resolved fairly quickly; but her behavior got worse for several days. I would say that by about day 5 behavior was significantly better.

You might refer her to the National Institutes of Health Celiac Awareness Campaign. www.nih.gov, search celiac. It provides a link to educational materials. I also would recommend the book "Celiac Disease: A Hidden Epidemic" by Peter Green. Finally, I would agree with the others who recommend that you take your kids to the doctor yourself. I don't know how old they are, but if they are young and have celiac, development can be affected, as can education.

We put my daughter on a gluten free diet when she was 4. In a year and a half she jumped from 3rd percentile for height to 10th percentile. Her first two permanent teeth are just starting to come in and they are discolored and spotty - possibly a result of untreated celiac when the teeth were developing. She also has better attention/focus and is more social than she was when she didn't feel well all the time.

When I started gluten free, it was for my daughter, who was 4 1/2 at the time. She ate peanut butter and jelly sandwiches every day. So, I was on a mission for a good gluten free bread. I've lost count of how many mixes and recipes I've tried. The best I have found is "gluten free sandwich bread" from www.glutenfreegirl.blogspot.com. My husband, who is not gluten free, loves it and digs in as soon as it comes out of the oven. I've served it to non-gluten-free friends for sandwiches and toast, and they are all surprised to learn that it is gluten free. If you can't find the recipe on the website, let me know and I would be happy to post it. (Note that there are a lot of ingredients and it looks a bit intimidating at first. After making it 2 or 3 times it has become routine. I usually make a double batch, slice up the loaves, and freeze them so I have sandwich bread available for my daughter all the time.)

Also, I second the recommendation of Pamela's mixes. I have served Pamela's pancakes and waffles to non-gluten-free friends and family - they all want the recipe after tasting them.

Finally, the best cookbook I have found is Gluten Free Baking Classics by Annelise Roberts. Again, gluten eaters have no idea that they are eating gluten free. (This is where I found a pizza crust that passes muster for my Italian husband!)

Try not to get too frustrated when you start baking. There is a learning curve, but it becomes routine if you experiment enough. (Lucky for me, I liked cooking/baking before I started down this road.)

Good luck!

Hello. I have recently gone gluten free after many inconclusive tests. I feel amazing now that I am gluten-free and plan on doing so forever if necessary.

However, I do want to "go back on gluten" to make sure that this is the cause of all my health problems. Does anyone have advice on how i can systematically do so? Or is there a specific food I should eat once and see what happens? Or eat all the gluten I can consume in one day? I am scared to go back on and worry about feeling horrible. But I know it is the right thing to do to make sure gluten is really my problem.

Also, is it possible that since I am not celiac diagnosed that I could ingest small amounts of gluten and not have a problem? I am mainly thinking of not having to worry about cross-contamination.

Finally, is it possible that i have to "clear" out my body of gluten every couple of months, but can otherwise not avoid it 100%

i think i am know the answer, but I wanted to see if others live 1/2 gluten free.

Your questions sound like mine just a few months ago.

I had been gluten-lite for a long time -- just knew that I felt better on low carb diet and that I did better with rice than with pasta. This past December, my allergist ordered the celiac plus panel for me, which includes the genetic test. The celiac panel, of course, was negative (because I had barely been eating gluten), but, I learned that I do have the DQ2 gene.

So, here's the rest of my story. Over the holidays, I didn't worry too much about what I was eating, but noted that every time I ate pasta or cookies (at my Italian in-laws house) I was overwhelmingly tired, headachy, and my arthritis symptoms flared up. I then decided to do a gluten challenge. Four servings of wheat per day for a month. Within the first day I was bloated, gassy and had reflux. Intestinal symptoms (previously not the most significant of my symptoms) began the next day. Over the next several days the list of symptoms expanded - an itchy blistery rash all over my scalp, mouth sores, neuropathy, dizziness, fatigue, arthritis, and the list goes on. I continued the challenge for the sake of the biopsy - which, of course, was negative. I have been gluten free since the day of the biopsy and I will never go back.

As for your cross contamination question, I assumed I would be immune to that since all my testing was negative. I figured I'm gluten sensitive, not celiac. Now I know differently, I have reacted from a communion wafer, salad dressing in a restaurant, and french fries that probably were cooked in the same fryer as batter dipped food. I can sense it almost immediately and have been stunned by how sensitive I have become. The difference between gluten-lite and gluten-free is significant.

I wish you well in whatever decision you make. For me, I needed the drama of all the symptoms to believe that gluten-free has to be 100% and forever. (And by the way, I'm now arthritis free for the first time in about 6 years.)

I'm on hour 48 of no gluten. I feel like I'm living in a daze. Very weird.

I think the "brain fog" is a relatively common symptom, and like Riceguy said, could be gluten withdrawal. I had it throughout my gluten challenge and for about a week after I went gluten free. It's now my first tell-tale sign when I have gluten by mistake.

Good luck!

You won't necessarily get a positive diagnosis after a gluten challenge. I tried it a couple of months ago and was had worse symptoms during the challenge than I ever did before having gone gluten free. I've read quite a few posts of people who have had negative tests after gluten challenges, but still know that they respond well to the gluten free diet.

Also, I think I read somewhere that a dermatologist can trigger a DH outbreak using an iodine patch. Maybe something to investigate if your DH hasn't already been confirmed and you really want a diagnosis.

My 6 year old daughter and I each have a single copy of the DQ2 gene. According to her pediatrician and my GI doc, that single copy of DQ2 increases your chance of developing celiac to 10 times that of the general population.

Both my daughter and I have responded remarkably to the gluten free diet, although both of us had negative blood results and I had a negative biopsy. (We both had testing done after having been gluten free for a period of time.) Based on the information we have right now, we both will remain gluten free. The tough part is that with no "real" diagnosis, my mother thinks I'm going overboard and that having gluten once in a while won't hurt anyone. The fact is, I know how awful I feel when I get glutened and I want to avoid it for both myself and my daughter.

I was 43. First figured out that I did better on low-carb diet back when I was 30. At that point I had had many symptoms for 10 - 15 years. So, somewhere around 25 years of symptoms before figuring out that gluten is the culprit - including migraines, brain fog, vertigo, neuropathy, rheumatoid arthritis, possible sjorgrens syndrome, reflux and all the other digestive symptoms, and the list goes on.

I was diagnosed with yeast syndrome 13 years ago. I figured it out myself based on Dr. Crook's book "The Yeast Connection" and made an appointment with one of the doctors listed in the appendix of the book. He diagnosed me by looking at a drop of my blood under a microscope and found lots of yeast in the blood drop. apparently, there shouldn't be yeast in your blood.

If you are interested in finding a doctor who believes that yeast syndrome is real, "The Yeast Connection" is a good resource. Also, I also have found www.acam.org. Under the "yeast fighting program" tab, there is an option to find a healthcare professional. You can search within a specified mile radius of your zip code, and the results list each doctors' specialties, including yeast syndrome.

If seeing one of these doctors is not an option, I also have used a probiotic called Threelac when I felt that some yeast symptoms were returning last year. I used it for my 4 year old daughter, too, when her symptoms were only partially resolved on a strict gluten-free diet. I found Threelac to be quite effective for both of us. Do an internet search and you'll find quite a bit of information about the product - some people like it, some don't, of course!

I have a similar question. I was gluten-lite from August 2007; positive genetic test December 2008; gluten challenge january/february 2009; followed by negative biopsy.

During my gluten challenge I broke out in what I thought was some weird kind of acne around my hairline, on my neck and a bit on my scalp. It just kept getting worse and tremendously itchy. By the time I made the connection that it might be DH and then more time to get a dermatologist appointment, the rash had almost cleared. So I cancelled the appointment. Now since being completely gluten-free (with a few slips here and there) since February 25, I keep getting a really itchy scalp with a few small blistery bumps.

So here are my questions -

Does this sound like DH?

Should I see a dermatologist?

How big to the blisters have to be to get a reasonable DH biopsy?

I guess I shouldn't care so much about diagnosis (or lack thereof) anymore, since I know the gluten-free diet is the answer to many of my issues. But there's still this nagging desire for a diagnosis...