NoGluGirl

I hate to even think this, b/c we luuuuuurve the new Chex, especially the Honey Nut, and I am thrilled  to have new cereal.

But, my little girl has been showing signs of gluten exposure, and this is the only new thing we've added recently.  We've had the Rice Chex before, but this is the first time we've eaten ALOT of Chex.  Since we found the new flavors that say gluten free, she's had some for breakfast, and for snacks pretty much every day.

Does anyone know for sure if they actually removed the barley malt?  I'm just asking, b/c the Rice Dream farse is still fresh in my mind, where they quietly removed the barley malt from their ingredient list, still kept it in the milk, but labeled it gluten free.

I'm sure this is not it, and I'll check with General Mills tomorrow, but just curious if anyone is having any problems with these new cereals.  Thanks!

   Dear taweavmo3,
               I was angry about the Rice Dream situation as well.    It is infuriating, but the FDA does not regulate things as they should.  A Chicago Tribune article a friend sent me told of how people with anaphylactic reactions nearly died due to eating foods that were not properly labeled.  Testing is not done in most facilities, and this needs to change.  I am now afraid to eat anything made by the Hain Celestial Group.

             They make Arrowhead Mills products as well as Rice and Soy Dream.  A friend of mine got ill from using their gluten-free flours.  I was using DeBoles pasta, which they also make.  I become violently ill from a microscopic amount of gluten, so I am paranoid-careful.  One company I feel sets a wonderful example is Kraft.  This company has been labeling allergens clearly for 14 years, and they were the ones who notified the FDA about the salmonella outbreak in the pistachios.

            For the record, I have had the new Chex cereals, and done well.  However, eating too much of anything puts a person at risk for developing a sensitivity to that food.  Varying your diet is essential to avoiding new food issues.  That is what makes this disease so frustrating.  If it is not one thing, it seems to be another!

                                         Sincerely,
                                                NoGluGirl

Hello All,

First off, I am sorry this is so long - I am an amateur Celiac

I was diagnosed with Celiac on the 22nd of December. Matter of fact, I was driving back to hometown for Christmas when the doctor's office called to confirm - biopsy and blood panel were positive. I am 31 and was raised in an Italian family (so gluten has been a staple). I never had any syptoms, until around October when I was under a lot of stress and received a flu shot around the same time. My GI said that I have had this for years because my Villi were so flat - as he saw in my biopsy. So why no symptoms until now?

I am very concerned if my symptoms seem consistent with Celiac Disease.

I have a loss of appetite, loss of sex drive, an overall feeling of just not being well. I have a mild headache and almost a lack of concentration, "head in the clouds" feeling. I have lost weight - I was 182 (a little heavy for me anyways) before my colon/endoscopy on December 10th. I am at 171 now. Sometimes my stools are loose, sometimes they seem to want to begin to form.

Over the holidays, I really made sure I was eating "Gluten Free" products. My stomach gurling began to subside a bit. During the holidays, I was feeling better, less of the symptoms above. I was drinking Vodka (Burnett's Quadruple distilled) and Diet Ginger Ale (Seagram's) the entire time. For New Years I switched to Burnett's Vanilla Vodka and Diet Ginger Ale. After New Year's, I have had this mild, lasting headache, my stools have become loose, and just an overall anxiety feeling that something else is wrong. My girlfriend has been amazing in supporting me, but we didn't know that hazelnut coffee (not syrup flavored, but in the bean) may have gluten in it which I had been drinking, now back to black. We also weren't 100% educated on de-contaminating our kitchen either. So these things may have been the cause. Since New Year's, these feeling have lasted, today is January 6th. My headache is beginning to subside and my stools are a little more formed. My stomach activity has also slowed a bit.

I am really concerned with my weight loss and the headache/concentration "head in the clouds" feelings.

As soon as I found out my diagnosis, I have been doing my best to avoid Gluten containing foods and have been pretty religious reading this site and others out there. I am slowly but surely getting there though.

Thoughts and opinions are greatly appreciated.

Thank you all!

Cheers!

Dear Nichelob,
You symptoms are typical. Cross-contamination is so difficult to think of everything. Your toothpaste, mouthwash, even kissing your significant other can gluten you. A microscopic amount makes me violently ill, so I have to be extremely careful. It is best to get new cookware if you can as well as utensils. This is a lot to deal with, so do not feel bad if you are overwhelmed. Feeling this way is natural. If you like, I can e-mail you a list.

Sincerely,
NoGluGirl

Dear Carla,
That is so wonderful about your improvement! We are all so happy for you! So, what is it like to be among the living again? You and Kassandra are inspirations to us all. The progress you both have made during the past year is truly astounding.

I sure would not mind going to Germany for treatment if affordability was not an issue. Did you know Homeopathy began there? Germans did not just create good beer and kuchen. Speaking of kuchen, I miss eating that! I wish I could have been able to use my computer when Rachel went, because I could have helped with some basic vocabulary.

Dear Donna,
You are right. ERCP is a type of endoscopic procedure. It actually combines endoscopic and X-ray diagnostics. I found out there is a new non-invasive form called MRCP. I am going to do more research on it, since perhaps this may be helpful in the future to be certain nothing is amiss with my bile duct or sphincter.

Yes, those Mucinex commercials are just slightly disgusting. However, at least it is not nearly as horrid as that commercial showing the fat in a smoker's lungs! They should really place a graphic warning on that for those of us with sqeamish tendencies. Another important consideration is that children could be traumatized by seeing that. It appears the networks are editing out the less offensive items more, and exposing us to the wrong images.

There is not a single safe place in this house for gluten-free food preparation. I have no idea what to do. People are always fingering things and putting items from the crumb-filled floor on my table! How am I ever going to heal this way? I would think the health department or Adult Protective Services would have to help me since the diet is essential to recovery.

I do not blame you for being careful about the store-bought Jell-O. Chemicals are really loaded in it. Being allergic to dyes makes it a terrible idea for me. Making your own is probably not too difficult. You can even make it healthier by substituting agar-agar for the gelatin, and using fruit juice without added sugar!

Dear Sherry,
Sometimes you have to take a large amount of vitamins in order to absorb enough to help. Dr. D is having me start out slowly with everything and build up. I told him, I do not think my body likes the multi-vitamin for some reason. Chlorophyll can be used to pull out toxins, and that is what I am thinking may be why my colon does not like it. My upper tract was not fond of it, either. Taking more than one daily is asking for trouble.

EFT sounds interesting. Can it be used for anger? I need all of the help I can get in that department. Do you have a link? If so, it would be greatly appreciated.

Dear Rachel,
The shyness you describe is what I was like when I was younger. They say Celiacs are prone to it. All of the sudden, I went from being an outgoing child to the exact opposite. As a teenager, I became so insecure and rarely spoke to anyone in class. Suddenly, I became this person who clammed up.

Now people have a difficult time shutting me up. After I became ill and experienced so many bad things, I realized I do not have to let the world crap on me. What a revelation! I still tend to bottle my feelings up until they explode, though. I have never liked anyone seeing me cry or get upset. Anger is the only emotion I openly express.

People often see me as stand-offish. I am just not a huggy person. It is odd for me, unless it is someone I know well. Mom said she does not understand why my brother and I are like this. Saying I love you is weird for me, too. I suppose it is due to the experiences with family. Those words just do not mean much no matter how often they are said sometimes. Unless words are followed by actions, they typically are not that useful.

Sincerely,
Jin

Dear Paula,
Estrogen dominance very well could be a factor in why you do not tolerate soy. Soy contains phyto-estrogens. Anytime your hormones are out of balance, it can have a major impact on your body. I certainly have high hormone levels. Animals always want to mate with me! When I was younger, my brother's guinea pig began purring amorously, and I thought "Here we go again!" It figures! I finally find a man who wants children, and he is the wrong species!

I hope I am not reacting to soy, but it is something I have been wondering about for a while. You cannot even find gum without lecithin in it. That makes the situation so complicated! I cannot stop taking my supplements or medications, and they all have soy in some form. They also have dyes, which I have always been allergic to.

Thank goodness you are finally moving your negative feelings out. It would be easier for me to do if I did not have to deal with the crap repeatedly. They should be the only ones dealing with the fallout from laziness, bad decisions, and stubborness. Moving past it is impossible when you are still dealing with it. God knows, being able to let go of all of this anger and hurt would be a tremendous weight off of my shoulders and heart. I wonder what Kassandra did for her emotional issues?

The cause of my stress is primarily family. This is proof that I was correct when I said before I would be a much happier person if I were an orphan. My brother is also still waiting for the joyous news that we were really adopted and not related to any of these insane people. Perhaps we were aliens like Superman? Everyone has a fantasy, and that is ours.

Sincerely,
Jin

Dear Andrea,
My Thanksgiving was great. It was much better than last year, where I became violently ill from the cinnamon in the gluten-free pumpkin pie. This year, I just slept. My parents were gone at my grandparents' for a couple of hours, so I got some peace for a little while. Mom spoke to Cousin Mary about my Celiac, and she actually has two friends who have this disease!

Mary was a registered nurse before she and her husband started a family. It is nice to know someone understands how complicated Celiac is. Mom also said Grandpa was becoming aggravated about all of the talk about Celiac. Of course, he was probably so upset about Uncle Steve, he could not think about much else. He got so upset, he put the slice of pumpkin pie on the table, and the plates were right near him.

Uncle Steve had his gallbladder out on Thanksgiving. He is the fourth one in the family now! First, Cousin Chris had his removed in 2002. I had mine out in 2003. Grandpa followed suit in 2007, and now Uncle Steve! I suppose you are not officially a Kelley until you have had gallbladder surgery!

Dear Rachel,
All of the information about the methylation cycle is really interesting. Mutations probably do vary quite widely. Genetics are a strange thing. My mother's beautician has a specific mutation she passed on to her children, and it is causing an extremely rare muscular disease. At least this particular condition is slightly less complicated in finding the cause, but treatment is very difficult to manage.

I am not sure I have issues with dopamine. I can eat bananas. Of course, some of these foods have a variety of elements that may be issues for people. Thank you for the link to the dopamine foods list! Excitotoxins are certainly on my avoid list. My new healthy plan includes eliminating artificial sweeteners completely. Dad printed out this report from the FDA saying how safe these chemicals are, and how much is a safe amount. You know as well as I do, no amount of these excitotoxins is safe!

It is exciting, because our healthfood store across town carries gluten-free xylitol and agave nectar. This will certainly save me money on shipping, too! RiceGuy told me about a new natural sweetener made from orange peel and chicory. I am going to look into that as well. My list of healthy food substitutes is growing!

Pathway issues are complex. The trouble is locating the exact area of the pathway that is blocked.
This is an exact science, and is typically extremely exhaustive. Once again, it returns us to the philosophy of peeling the onion layers away. Little by little, another piece of the puzzle is found until you reach the core of the issues.

Lasagne sounds heavenly! I have been craving four-cheese lasagne for such a long time now! I miss it so much! How wonderful you are able to have it! Like Donna, I too am able to live vicariously through others. Feel free to post juicy details about your erotic tastebud experiences. Just be sure to place a food pornography warning on it.

I completely agree that crossing a threshold is a major component for many of us. Chemically sensitive individuals tend to be this way. I recall Julie and I discussing this before. She said she always reacted to something the third or fourth time she ate it. That is exactly what occurs with me! You will eat something several days in a row, and then the third or fourth time, it makes you so sick!

Having the stress in my life is not helping. I do feel this is part of why I react to foods. You said you know exposure to stress causes your tolerance level to dramatically decrease. Perhaps adrenal gland hormones play a role in this. Since you react to your own adrenaline, there could be a connection. Stress reduces enzyme production as well as increases cortisol and adrenaline output.

The books you mentioned sound like good ones. I may have to try and find them at the library. Yasko seems to have a good idea of what to do for unblocking pathways. Knowing about the various mutations and treatments is key to healing for many people. Researching these things will be fun.

Dear Sherry,
The SCD is not the easiest diet to follow! I am amazed at how well you manage all of your restrictions as you travel. I would become too overwhelmed. Thank goodness the carbohydrate related digestive issues are improving. It takes a while before these issues are sorted out.

I am glad you do not react to many foods. Something I read about goat milk having an enzyme helpful for digestion was very interesting. This is why sometimes people who do not tolerate regular cow dairy can eat goat cheese without any trouble. Dogtor J is a Celiac vet, and it was in one of his articles. I am anxious to go back and read it in-depth.

Avocado is probably not widely available where you are. We are fortunate Mexico is so close. Most of our avocado supply is from there. I put it on my foods I rarely eat list that I could add in more often. I am going to try new foods as well, but need to limit that so in case I have a reaction, I will know what from.

Stress would completely disappear if finances were better, and I did not live here. All of this crap is going to kill me. I have an idea, but do not know if it will work. Checking into it cannot hurt anything. The worst thing that happens is no one will help me get out of here.

Dear Nancy,
The CFS group on Yahoo sounds interesting. They cover much of what we discuss here. That is good. Your information on the CFS was really helpful. Thank you for posting it!

My B-12 supplement is methyl B - 12. I do not think it is hurting anything. However, I do not have mercury as far as I know. That makes a difference. If anything is an issue, lead and possibly aluminum are the two metals I am most likely overloaded with. The supplement I take is only methylcobalamin and calcium. It is just plain bonemeal powder.

I am surprised the CFS group does not address parasites. They can hold on to metals. Mercury is one worms can really hold a lot of. I researched Ascaris the other day. A forensics show talked about a woman found in luggage at an airport having it. She had an entire bolus of them, and I could not help but research it.

In the show, they made it sound like Ascaris is a rare parasite. However, this is not true. Up in Frankfort, IN, 87.5 percent of sewage samples taken contained the parasite! Ascaris is endemic to the Unites States. An adult female worm may grow to be 40 cm in length and lay more than 200,000 eggs daily!

We often accidentally ingest them in produce, where the eggs hatch inside the intestines. The larvae then penetrate the intestinal wall into the lungs, where they may cause pneumonia. Human hosts will then cough up the worms, then swallow them again, returning them to the intestine. Ascaris then matures, and creates a large ball of worms known as a bolus. You have to admit, it is quite amazing how these creatures survive, even if they are disgusting.

Dear Paula,
It is wonderful Andrea helped you work through the anger. I seriously need anger management. Right now I am angry because Dad ate two of my brownies. He better not have glutened them! He needs to keep his gluten-laden hands to himself and out of my food! I want to chop all of his fingers off.

I wonder if DH can mimic acne and eczema? I have both, but sometimes I wonder if it is DH. Even prescription creams burn my hands. Sometimes the blemishes on my face itch and burn. Is that normal for acne to do that?

What wonderful news it is that you are doing better! You have had a rough time for long enough! I am glad only one of the supplements has caused you trouble so far. Hopefully, the trend will continue. Adding in the supplements is somewhat daunting, so do the best you can! I made a little introduction schedule on a table for me. That made it much easier!

Dear Donna,
Pancreatitis is no fun at all! Did your physician perform ERCP? That procedure has a risk for pancreatitis as a complication. It is often used to diagnose Sphincter of Oddi Dysfunction. I am glad you are improving.

Fat is definitely a foe when pancreatitis is concerned. A strict limit is often necessary. Perhaps you will get to eat some goodies at Christmas? They will likely be worth the wait. Hopefully, your on-again, off-again relationship with eggs will be figured out. My best friend had a terrible asthma attack at work the other week, and now they think it may be that she is allergic to eggs and chicken.

Walks are nice. I never get to go on them. They would be such a good way to get in shape! Congratulations on losing 13 pounds, although it was not quite how you planned. I really need to tone up more than anything. At least that toe will hold up for you now!

Is that Floppy Intestine Disease or Syndrome? Or, do they not have an official name for the condition yet? Well, whatever the heck it is, at least they fixed it. Those alien babies really do tend to warp wherever they are at. Does this remind anyone else of those Mucinex ads?

Let me put it this way, I look forward to days when Dad goes back to work. Him being home for four days is horrible! That is just more housework. Plus, you cannot cook when gluten-eating freaks are running around the kitchen. This is not a safe environment to prepare food. Mom and Dad were not home last night until after midnight, so I got a brief break.

Dear Nora,
Flour definitely causes some extreme misery when it comes into contact with skin. I am not sure if I have DH or not. I cannot afford a biopsy, but know some people had what appeared to be acne when it was not. In this house, avoiding touching gluten in any form is impossible. I do the dishes, the dog has treats made from it, and the rabbit has his food. Rabbits have to have their food, which contains alfalfa, oats, and wheat. Poor Boomer probably wonders why Mommy cannot kiss him.

Dear April,
Changing offices is really stressful! Following the SCD is impossible with that going on. You can only manage so much at once. Sometimes, you need to take a breath. Doing everything at once is just not practical or possible. Do what you are able to when you can.

Your poor son has that awful parasite! They get everyone. I am not surprised by how badly the gluten bothered your son. It has opiate properties when eaten by some individuals with Celiac, causing everything from Bipolar Disorder to Schizophrenia. ADD and ADHD are very common with food - allergic children and adults.

My stress is going to lessen soon. I am going to start looking out for myself, and take care of my own needs. No more neglecting my basic needs for other people's petty desires! I am not going to keep my mouth shut anymore. People should know why I am so angry, and who is the real irresponsible one. I am sick of trying to be the good little daughter who shuts up and takes it. It is impossible to please anyone in this family, and I am done trying.

Sincerely,
Jin