1desperateladysaved

In the beginning of my celiac journey; I expected that my biological children may also have celiac disease.  I urged for the whole family to use caution and do a trial gluten free. Because of my super-sensitivity to gluten, we created two kitchens. Now, a decade has gone by.  My 5 children grew up and flew the coop.  Not one of them has opted to be tested or go gluten free, so far as I know, although each is gluten aware more so than I would have been. 

I have one child still at home.  This child just got caught with High IgA gliadin!  Now the odd thing; this child is adopted?!  She is working on going gluten free.  A few tiny mistakes have sent her reeling.  First she was hungry when out and ordered some noodles.   Next day, she called me from school sobbing; her tummy cramps were unbearable.  More recently, she ate tater-tot casserole and felt full for days. As a mother I went from spoil- sport to super smart in a few months!   Now, she says, "I deserve this for the way I treated Mom!"  I feel for her; I can relate to big consequences for little mistakes.  I can also laugh as I did at my stupid mistakes in the beginning.  Who would think that a tater-tot would contain more than potatoes, eggs, and salt?

I would like to encourage other mothers out there.  Do what is right for you and when they get desperate themselves; they will know who to go for to get help.  In the past other parents warned me not to be so demanding as they would rebel.  I found out that when I followed a healthy diet and discouraged them from sodas, junk food, and processed foods.  They grew up and didn't like sodas, heavy sweets and they value making foods from scratch!

Dee



 

At the grocery store the other day, I checked out the meats. I noticed a package of turkey breast, which I use to frequently buy before I found out I had allergies to it. I absently passed on by.. I got a few feet away and stopped dead. "Wait" I told myself; I can have turkey! I turned and took a couple of steps back. Oh, right, I thought as I turned away again, but what fun are turkey nuggets without breading? I haven't had breading for months. I walked away. "But wait!" I got almonds back and can make breading with that! Tears in my eyes, I bounced over to pick some out! I felt like I had won a big contest.
 
Maybe it was worth losing foods, so that I won't take them for granted when they get them back. I had antibodies to nearly everything I ate over the years. I tested out super-sensitive to nearly everything. NAET started addressing these sensitivities beginning with basic nutrients such as vitamin B, Vitamin C, and sugar. At the end of the basic treatments I started multiplying foods back in.
 
Several months back now, I told of a plan to try NAET treatments for my allergies. Quite a few things happened with that and I have been off while I am busy learning and talking about NAET. One readded food is coconut water, which last summer's attempts to drink brought immediate noises from the tummy and a rush to the bathroom. Now, when I drink it, the tummy is silent. Last year, my skin reacted for weeks when I got scraped by raspberry bushes. This year no reaction. Thus I am experiencing profound changes and feel hopeful I will be able to eat most anything (but gluten) in the near future.
 
Yesterday my brother in law declared. "Dee, you look like you are so much better than a couple of years back. You just look like you feel so much better." Indeed, I sat watching the soccer game with a ready smile on my face. I felt good. Many things have worked together for my healing. I am happy that NOW extended family and family alike can see the blessed changes in my life. Recovery, has been complicated and long, but I have been carried through.
 

Keep on keeping on fellow battlers.

This year a doctor told me not to eat anywhere but home. My body is acting super-sensitive and I didn't want to rock the boat. I alerted my sister, the hostess, and my brother that I would be unable to eat at the gathering, but would eat on the way there. On the way there I enjoyed my very filling rice and beef casserole. I had planned to do a regular turkey dinner, but when I remembered I couldn't have mashed potatoes and gravy, I skipped it.
 
After arriving, I walked into the kitchen, smiled and said, "Everything, LOOKS delicious!" The family laughed. I sat at the table while they were eating and said, "Everything SMELLS delicious!" As they were finishing up I told them, "My tummy feels happy now!" It did! Now all that is left for me to do is ask around my family, find out what tasted good. Then I can tell them the so and so tasted great!
 
I am happy to say that everyone had a good time and I didn't swell, bloat or get fatigued!

Before I diagnosis, I did not feel celiac pain. I would notice my tummy bloating, my legs swelling, and have a pregnant looking belly. I had extreme fatigue and foggy mind, but didn't realize those until it went away one day. I trudged on with these mysterious symptoms that were "All in my head." Wondering in my dreamy state if something possibly was wrong.
 
Now, I am 18 months (well there about) into a gluten free diet. Some mysterious way, I got some gluten. Right away I felt sharp pings in my abdomen. The old pregnant looking belly appeared, I had a couple of days of extreme fatigue. I even got diarrhea, and I didn't have that as a symptom before diagnosis. . If I had I felt these signs during my 30 years of battling celiac disease; I would have been asking someone questions right soon. But I didn't feel them.
 
Today I am glad for pain. It is there to tell me (In no uncertain terms) that something is WRONG or something needs changing. I don't feel like I am dying, or have gone back to square one. I still have a clear mind and energy. Yet, I have been enabled to hear with once deaf ears, and I see where I couldn't see before. Pain is my friend today.

Dear Future Amy,
 
I know you are doubting your intolerance/sensitivity to gluten. I'm sure, now that time has gone on, you're starting to doubt the trouble it has caused you. You have forgotten how very miserable your gluten challenge was, and have started allowing the if's and the but's and the maybe's into your mind. So, I'm writing to you now, to remind you...read this and think back. Remember. Accept. And for the love of God, put down the Vanilla Porter, or the flat bread, or the Oreo, it's not worth it!!!
 
Reminders:
* Bloating - feeling 6 mo pregnant, all the time. Remember how miserable you felt in your suits and jeans!
* Difficulty losing weight/changing body composition despite doing "all the right things"
* Constipation - remember how excited you were to have a normal BM the first week after going gluten free?? Remember the thin BMs, the rabbit pellets, and then the days full of "D" after running or "eating something wrong."
* Fog head - think of work, how hard it was to concentrate on writing disciplinary action letters, how long it took. Then think of home, how mentally tough it was to put together a simple grocery list (only to forget the important things, e.g. milk)
* Unusual fatigue - suddenly unable to make it through workouts, like suddenly couldn't finish a set from failure/shaking/weakness but your muscles didn't feel taxed...remember how much you used to love lifting and running?
* Dry skin/eyes - think of the horrible cracks on your hands, how much money was spent on magic lotions and potions that never worked, think about how red your eyes always were, how you could never wear contacts, how you rarely had tears, even when crying
* Short tempered/irritable - how many times did you lose your temper with Maddox when he didn't deserve it? How many times did you act irrationally with Boyd? Think of the times at work when you felt unreasonably ticked you off and how pissy and later embarrassed you felt about it.
* Periods of depression, constant mild anxiety. Think about how stuck you felt when you were so overwhelmed you didn't know what to do, so you did nothing...remember how anxious you always felt about your "to-do" list at work and at home, and how you felt out of control and like things were stacking up, over your head, with no end in sight.
* Think about your gums, the recession and reduced enamel, the horrible tooth sensitivity
* HELLO, fibromyalgia!
* Headaches
* "Irritable bowel syndrome"
* Psoriasis of the scalp & the odd bumps on your neck and behind your ears
* Think of your three angels in Heaven
 
Now, remember the gluten challenge; five weeks of hell. Think about how, within a week, your brain was worthless. How you washed your hair with shaving cream, and wore flip flops to work by accident. How you gained 11 lbs in 3 weeks...even while barely eating. Remember how pensive you were to eat at all? Remember the last few weeks, when your head hurt so bad you couldn't think straight and no pain medicine worked. Remember the fire alarm!! How everyone at work was worried. How nauseous you felt after every meal... Think back to that night you slept from after work to bedtime, and then went right back to bed, and the Sunday when your stomach hurt and head hurt so bad you slept from right after church till dinner, and was back in bed after Maddox was asleep. Remember how bad your muscles & joints hurt! Think of how your jaw felt permanently clenched and your neck muscles were stressed.
 
If all that doesn't bring you back to reality, remember the sweet voice of 3 year old Maddox, "Mommy, you not sick anymore?" He knew something was wrong and he was worried. Remember how sad and defeated you felt when you you couldn't muster the energy to play power rangers with him or push him on the swing for more than a couple minutes. Think about Boyd. About how strained your relationship became... And how often you thought about all this and prayed for the day when you could banish gluten forever.
 
Stop questioning yourself. Whether Celiac, or NCGI, or only gluten sensitive, your body does not do well when gluten is in it. THE END.
It's not worth the flavor or the texture. You will regret it. So put it down, whatever it is you are considering eating/drinking that you know will make you sick. It's not worth it!
 
Sincerely,
 
Past, sick as a dog & miserable, Amy

I have always emphasized eating to be healthy and did not focus on my weight or figure. I am somewhere around a month (?) into my rotational diet and also began pancreatic enzymes and vitamin B recently. My weight began at around 200 6 years back. I lost 30 lbs when I began a supplement program with my chiropractor. My weight had become relatively stable at 170. That seemed an okay weight at 5'7" since I am nearing 50 years old.
 
The last week I've noticed my face is looking thin. I have been noticing that my pants are getting baggy. The crotch is hanging way too low and gets in my way when I am walking. I always wear a dress that covers me, so my struggles with that are not obvious to others. I also feel my bones coming out from various places. My skin is somewhat sensitive to the touch. I felt tickled when I was touched lately, and I hadn't had that feeling for years. I have also noticed that my belly is debloating. I had this running argument with my doctors about weather my muscles were out of shape or something was odd. Just now, it looks like I could win that argument.
 
My little daughter (8 years) had a look at me today. She said, :"Mommy, that dress is too big for you!"
 
It is just a bit too big. I think it is one I threw in the bottom of the closet last summer, because it was too tight.
 
I haven't eaten sweets (except 2 almond cookies) for nearly 6 years. I was wondering why I wasn't the wisp of a girl I was in high school. But everyone tends to put it on. My weight gain began in my 20's as many people's do. It seemed strange, in my case that my belly looked like a I was pregnant often, or like a person suffering in a famine with a distended belly. When I took measurements my waist was way bigger than the rest of my body.

Yesterday, my family went to a prayer meeting for a friend with vasculitis, an Auto Immune disease. He has had very obvious problems and was hospitalized twice and once it was for a very long time. The prayer meeting was patterned after James 5. (Bible)
 
After arriving home, my husband talked with the children if they thought a prayer meeting like that is a good thing. They affirmed that it was a good thing. Then he asked if we should have one. They could not imagine who in the family would need it.
 
This is some of what they have seen:
 
Mom gets really tired.
Mom gets irriatible. (Maybe by now they just think I am a jerk)
Mom takes many supplements
Mom has a special diet and can't eat anywhere else.
Mom experienced 12+ years of infertility.
They received a letter from my doctor telling of my having an illness severe enough to cause my death.
 
How can children between 8 to 20's not see?

Next week will be my 4th month gluten free and I have only recently discovered how badly my body reacts to any cross contamination.
 
The first time it happened (and last time! so far..) I had made my dinner completely gluten free. Then I made my daughters lunches for the next morning, some rice pilaf and cut up meat, and while cutting up the meat some of the rice fell onto the counter. I picked it up and threw it away. Later sat down to watch tv and snack on some gluten-free pretzels and then it hit my.. the stomache aches and pains. I racked my brain trying to figure out what could have caused it and the only conclusion was.. that darn rice pilaf! Ironically that same night while I was sitting there I read a post on here and someone had had almost the exact same thing happen to them and I realized it definitely was the rice pilaf. Since then my husband has seen first hand how important it is to keep everything clean and keep washing our hands. He has been so supportive and is now constantly washing his hands too... like when he sticks his hands in the ice bucket he washes his hands first so he does not contiminate all the ice cubes. (He thought of that all on his own!! )
 
BUT now I am thinking... how can I educate the visitors to my home about how serious this is... My family comes to my house and babysits my 3 girls during the day when I go to work. They are there all day and bringing their own food (which 99% of the time contains gluten). Plus my girls are still eating things with gluten like english muffins or sandwiches. I keep my gluten free items in a different cabinet so no one goes in there... Since this all started running through my mind I feel like I have serious OCD! The first thing I did when I got home from work yesterday was wipe down all my counters and fill the dishwasher with all the dishes they used during the day. I hate feeling like I come home and a completely infected home, and its my home! I am still in the learning stages of this and until I was sick from cross contamination - even I didn't realize how serious it was so trying to educate my family who doesn't live with me and see it first hand will be a challenge. Especially since I am still no expert!
 
I am sure over time it will get easier for them to understand and for me to explain... only I can really feel out how to bring the subject up. But isn't it so true, that with gluten intolerance or celiac (any food intolerance really..) along comes its partner in crime - obsessive compulsive disorder!! ("how did you make that food?" "what touched it?" "what are the ingredients?" and "did you wash your hands????!")
 
Just have to keep at it, and stay healthy!

I’ve realized that I have not written for almost a week and I think I am okay with this. When I started this blog two months ago, I anticipated being able to post about once a week, so I think I am on track. Between working full-time, running, and trying to squeeze in some sleep, the main reason that I have not had time is that I have four small children. I am trying my best to cherish this phase of our family life, as I know that someday I will have four teenagers at once!
 
None of my kids have Celiac Disease, but I consider them all to be at high risk for its development. Although I was diagnosed when I was 33, I have probably had Celiac Disease since early childhood. My mother also has it, and interestingly enough, was diagnosed after I was. Through conversations with aunts and uncles, it seems there is some “gluten sensitivity” in my deceased dad’s family. Although my husband, Tom, does not have Celiac, we do know that he is HLA-DQ2 positive, as he was tested by his GI doctor. He has both an aunt and cousin with Celiac Disease as well. If none of my children go on to develop Celiac Disease, I will be truly amazed!
 
We started off my Celiac journey with a shared kitchen. I read up on this as much as I could after diagnosis, and I had my own “gluten free” cabinet, pasta strainer and pasta pot, cooking utensils, baking dish, etc. I also kept separate gluten-free butter, peanut butter, and other condiments to avoid cross contamination. I always put my items on a piece of aluminum foil when toasting because I was never able to find the “toaster bags” which people would discuss on the Internet forums. I thought that I was doing everything right and although our gluten-free/non gluten-free set-up did work for a while, I kept on getting sick. In 2012 I developed a peripheral neuropathy, which is persistent numbness and tingling from nerve inflammation, and was evaluated for multiple sclerosis. My neuropathy ended up being Celiac Disease related, as a result of continued exposure to traces of gluten. We made our whole home gluten free in 2012 and I have had minimal problems since then. My exposure to tiny hands and mouths with gluten crumbs was much more damaging than I could ever have imagined when I was diagnosed in 2010.
 
Through starting this blog I have been able to interact with a lot of moms with Celiac Disease and/or raising kids with Celiac Disease. Many of us have decided to raise all of our kids gluten free, however, this seems to be controversial. I have learned that many people are being advised by their doctors that it is not “safe” to raise their non Celiac children gluten free, because they are being told that by doing so that they are depriving their kids of essential vitamins and nutrients. I have researched this and have not found any evidence that this is the case, as long as gluten free kids are given a wide variety of non-processed, nutrient-rich foods.
 
Our youngest is now 10 months old and, freakishly enough, has 7 teeth, so she is eating table foods at dinner. We eat a lot of vegetables, fruits, meats, eggs, beans, and fish. Our “starches” consist of potatoes, rice and risotto, squash, and sweet potatoes. Once a week or so we will make a gluten-free pizza of some sort. Lately we have been making a cauliflower pizza crust which I adapted from a recipe I found on Pinterest (I will post it on the “Recipes” page of this blog soon). We occasionally make tacos, enchiladas and other Mexican foods, pasta or lasagna, and Indian dishes, usually a chicken curry of some sort. For snacks our kids eat fresh fruit, applesauce, popcorn, dried fruits and nuts, yogurt, string cheese, gluten-free crackers and rice cakes. We always have a few “treats” in our home, usually Annie’s gluten-free Bunny crackers, ice cream, and a tortilla chip of some sort. I bake a lot of treats for the kids as well. We’ve made delicious chocolate chunk cookies using almond flour 2 or 3 times in the past week (see link). We’ve said goodbye to a lot of convenience foods like chicken nuggets and frozen macaroni and cheese.
 
I do not see any evidence that my children are nutritionally deprived. They are growing and thriving, are not anemic, and interestingly enough, my two oldest have grown quite a bit since going off of gluten last year. I give all of them a calcium and vitamin D supplement once a day, but I have done this for years. We live in the midwest, where vitamin D deficiency is rampant in both kids and adults, and a deficiency is associated with the development of autoimmune diseases. I have not given them any other vitamins or supplements. I am pretty certain that they are getting enough protein, fat, vitamins, minerals and calories for proper growth and development through their diets.
 
I am not trying to say that what I am doing for my family is right or best for all families. I am sharing my story in hopes that it may help others to make the decision whether or not to make their entire household gluten free. Looking back, I wish that I would have made the transition much earlier in my journey, as it would likely have prevented me from developing neurologic complications from Celiac Disease. Thank you for reading!

Most of the articles about gluten and celiac disease I’ve came across in the media have focused on symptoms related to digestion, such as abdominal pain and bloating after eating gluten, and damage to the small intestine. The bulk of the gluten-related discussions on the celiac forums I’ve perused concern questions and answers regarding the diagnosis of celiac disease and tips for following the gluten free diet. There have been several papers published over the last few years about the neurologic effects of gluten exposure for those with celiac disease and non-celiac gluten sensitivity. I do not believe that they have gotten the attention that they deserve in the media or on the forums. I am especially interested in this area as over the last few months I have developed a peripheral neuropathy (nerve damage) related to having celiac disease.
 
Dr. Hadjivassiliou is one of the leading researchers on neurologic problems related to gluten exposure. Although I have no idea how to pronounce his name, I can tell you that he is on faculty in the Department of Neurology at Royal Hallamshire Hospital in Sheffield, United Kingdom. My favorite paper of Dr. Hadjivassiliou’s is a review article titled, “Gluten sensitivity: from gut to brain,” which was published in the Lancet, a major medical journal, in 2010. In this paper, gluten sensitivity refers to both celiac disease and non-celiac gluten sensitivity. Some of the key points of this paper include the following:
 
• Most patients with neurologic symptoms related to gluten do not have gastrointestinal symptoms.
 
• Ataxia (a problem with balance and coordination) and peripheral neuropathy (nerve damage) are the most common neurologic symptoms related to gluten. Up to 25% of celiac patients on a gluten free diet will develop a peripheral neuropathy at some point.
 
• Patients with neurologic symptoms often have celiac “autoantibodies” on blood testing, usually anti-gliadin (AGA) antibodies and/or tissue transglutaminase (TTG) antibodies. Many patients with these antibodies have non-celiac gluten sensitivity, meaning that they have high celiac antibody levels and symptoms, but no evidence of villous blunting (seen in celiac disease) on small bowel biopsy.
 
• The average age of onset of gluten ataxia is 53 years and for the gluten-related peripheral neuropathy is 55 years.
 
• Brain MRI findings can include cerebellar atrophy (loss of volume) and/or white matter lesions which may mimic those seen in multiple sclerosis.
 
• Neurologic symptoms often improve on a strict gluten free diet but may never resolve completely.
 
Gluten sensitivity has also been associated with seizures, dementia, and migraines. Obviously, further research on the effects of gluten on the brain and nervous system is needed. I’ve came across many people on the celiac forums who have psychiatric symptoms related to gluten exposure as well, although this has not been well-studied.
 
It seems especially frightening that many people who develop neurologic problems, like me, do so when they are already on the gluten free diet. This is a reminder that even small traces of gluten can cause serious damage to those of us who are gluten sensitive. If you have any family members or friends who develop ataxia or a peripheral neuropathy of an unknown cause, I urge you to recommend an evaluation for celiac disease and non-celiac gluten sensitivity.
 
For further reading on the this topic I would suggest the following:
 
1. “Brain Abnormalities Common in Celiac Disease Patients,” by P. Harrison, published in Medscape Neurology News on September 10, 2012.
 
2. Dr. Hadjivassiliou’s Lancet Neurology article, “Gluten Sensitivity: From Gut to Brain,” published in March 2010.
 
3. Living Without Magazine article, “Gluten Attack: Ataxia,” found in the Feb/Mar 2011 issue.

Source: I Am New To Pancreatic Enzymes And Recently Started Rotational Diet