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Category Archives: Your Stories

Your Story – Jane

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Hi everyone! Meet Jane! Please comment and let her know your thoughts and ideas if you can relate to her story. -Katie

I have been sick for 20+ years with stomach issues. It began when I left college and started out on my own (stress trigger?) I spent lots of time and money with various doctors doing scopes, etc all to the fall back diagnosis of ‘irritable bowel’. I was aware of the some of the food combination that bothered me so stayed away from them. But, the horrible, cringing cramps could happen hours after I’d eaten anything and bring me to my knees & fetal position in a Meijer food isle. I learned to live with it and it eased up a bit over time. I experienced no symptoms while pregnant – has that happened to anyone else??

Symptoms flared again (cramps, bloating, gas) and finally gave up all gluton 2 years ago when a homeopathic doctor said I could either take herbal/enzymes/pro-biotics at the tune of $80 per mo or go gluten free. I went gluten free and never turned back. Oh, I mourned (tears shed) the loss of my favorite pasta dishes and pizza (I’m married to an Italian) but it was never worth is to go over to ‘the other side’. And, began feeling soooo much better that I was never willing to go back on to test for celiac. That and the idea that my individual insurance policy would likely be dropped and or skyrocket in $$. So, I am a self-diagnosed as celiac but could just be gluten intolerant. Either way, not going near the stuff.

Now am working towards testing my little girls. Both experience lots of stomach aches and have learned that, because they are children, insurance coverage for them should not be an issue because of the ‘pre-existing’ clause. Do want input on experience with children and individual policy insurance…and best, most effective/accurate, least invasive testing methods?

So,that’s it. If either daughter needs to be gluten free the house goes gluten free. So far, have shared out kitchen and occasionally been making two meals. Am not a ‘natural’ cook so do struggle with coming up with yummy gluten free meals that everyone (6yo, 8 yo, hubby and I) will like. I want some really good, really easy gluten free cookbook recommendations. Anyone?

Calling All Stories!

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Hey friends! Happy Friday!

It’s been awhile since I have asked for Your Stories. Do you have a story to share about your gluten free journey? Any tips, tricks, lessons learned along the way that you could share with the rest of us? I’d love to hear from you!

Check out the Your Stories section on the site and think about what you could share. Leave a comment on this post if you have a story to share – I’d love to hear from you!

 

Your Story – Beth

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Hi, my name is Beth and I’ve been GF for 3 ½ years.  I am married to a wonderful, supportive husband, Gary.  We have four children, two sons in college and a daughter and son in high school.  Unlike many  people who have celiac, I did not suffer digestive problems most of my life.  In fact, I could be classified as a “silent” celiac.  I still do not have pain when I accidentally get into gluten.  My story began about five years ago when I noticed that I was experiencing increasing “gassiness”.  It was gradual, and as I was getting older, I just attributed it to aging, with so many other things that happen as we age.  I had been diagnosed with osteoporosis two years earlier, while I was still in my early 40’s and premenopausal.  But the gassiness was becoming annoying, so I made an appointment with the only female GI doctor in town, who also happened to be my mother’s specialist.  This doctor is wonderful, accounting for the four month wait I had before I could see her.

Let me interject here, that I have a cousin on my father’s side who had sent a note to family members a few years earlier informing us that he had been diagnosed with celiac disease.  I had never heard of it (in spite of the fact that I was a retired nurse) and just out of curiosity at the time, I looked it up to find out about it.  So when I saw the specialist and was giving her a history, I mentioned having a cousin with celiac and asked if maybe I should be checked for it.  She told me that with my osteoporosis, celiac was the first thing she would check for, even if I didn’t have a relative with it.  My bloodwork came back positive for celiac and we went ahead and scheduled the endoscopy to confirm the diagnosis.

At that time, I told my mother about my testing and diagnosis and suggested she also be tested.  She’d had osteoporosis for several years and had recently had issues with low blood levels of Vitamin D.   She had the blood tests done and was also positive.  We had our endoscopies with duodenal biopsies two days apart the week of Thanksgiving, confirming celiac in both of us.  My mother-in -law was great about accommodating my new diet for Thanksgiving.  She made the gravy with corn starch instead of flour and the only things I couldn’t eat were the stuffing and dinner rolls!

The next step, according to my GI doctor, was to have my four children tested to see if they carried the gene(s) for celiac.  Those tests were done and sent off to California (at a fair expense) and the results came back that they ALL carried the gene.  On to the next round of tests, much to the chagrin of my daughter who was NOT happy about a second blood draw!  Anyway, they all had celiac panels done and the results showed that my second son, who was sixteen at the time, had celiac.  So, in the course of three months, I and two family members who were diagnosed with celiac disease.  And possibly more surprisingly, we were all “silent”, or in other words, didn’t exhibit the classic gastric distress that many celiacs spend years suffering from.

By the time my son was diagnosed, I had spent three months learning the ropes of the gluten-free diet for myself.  Well, that may be a little too optimistic.  I had, at least, become somewhat comfortable with shopping for gluten-free food and had begun my new life as an active baker of most things gluten-free.  Anyone who has been in the same place knows the incredible learning curve you face when you need to begin looking for gluten in everything you buy, cook and eat.  I think it helped him make the unwelcome adjustment of giving up many things he enjoyed, to have me cooking good substitutions.  I should mention that we are avowed food snobs, my son and I.  The rest of the family is too, to a certain degree, but of all my children, Matthew is the snobbiest.  So, he wasn’t happy with the frozen breads and waffles available at the local groceries and health food stores.  I have spent the last 3 ½ years adapting my old recipes, finding new GF recipes to replace beloved baked goods and experimenting with some of them to make them acceptable to us.  I hope that my experiences and accumulated knowledge can help some of you.

Your Story – Rachel Z

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My story starts with a trip to the ER. One that I will probably never forget. I was at work and noticed that my heart had started racing. This, unfortunately, was not the first time that this happened to me. I have had problems with my heart starting at the age of 17 (I am now 33). However, years ago I thought that it was always caffeine induced and if I could control my caffeine intake that I would be fine. This last ER trip was completely different, however. I immediately felt nauseous, dizzy, loss of breath, cold & sweaty palms, and shaky (like my muscles were weak). They rushed me to the ER and hooked me up to all the monitors and an IV and took blood samples…to no avail. They couldn’t see that there was anything truly wrong with me. I went home, but they said that if it happened again that I would need to come back.

Sure enough, that evening my heart started racing again, so my husband rushes me down to the ER. NOTHING was discovered. They set me up with an internal medicine doctor to do a follow up. I met him within a couple of days and there wasn’t anything that he could see right away either. He said that I would need to be hooked up to a monitor. There were two issues that I saw with this. One, my heart didn’t have this problem all of the time. Sure my heart would race, but only occasionally. What happens when the hook up the monitor and my heart is beating normally during that time? Second, my husband and I could not afford medical insurance (looking back we really couldn’t afford NOT to, but that’s another story)! ALL of these medical expenses were coming out of our pocket and we just “spent” over $3,000.00 in the ER.

I decided to forgo the monitor and take my chances. The only problem was that after the trip to the ER, my health started going downhill faster than you can lick a popsicle on a summer day! I woke up feeling sick to my stomach and went to bed feeling the same way. My insides were feeling uptight all the time. I started to notice that my pulse would “quicken” at different times during the day. My last straw was when I realized that this “illness” was debilitating me. I was on a trip out of town with my mom and some friends when I had another “attack” like I was taken to the ER for. Only this one was worse, much worse. I had to call my husband to come get me and I was an hour away from home!

I was talking to my sister, not knowing what to do as we couldn’t really afford any medical treatment and she suggested that I look into seeing a Kinesiologist. I really didn’t know what one was and didn’t know what they did, but she was convinced that they could help me. I found a kinesiologist in the phone book and decided that it really couldn’t hurt. I made the appointment and went to hear what he had to say. I gave him all of my symptoms, my troubles with my health and didn’t sugar coat a thing thinking that he would say as the medical docs did that he wasn’t sure what was going on and he would need to do some tests. I was completely shocked when he wasn’t affected at all. In a very calm voice, he explained to me that he could help me!!!!! I was relieved, completely and utterly relieved. I didn’t care what he told me I had to, i was determined to try it…I was also very desperate; that tends to help! 🙂 I came home from that appointment and told my husband that the guy was either a quack or a total genius and I hadn’t decided which he was just yet!

A kinesiologist tests your body with different food groups by holding them up next to your body and seeing if your muscles go weak. If your body weakens, that means that you are sensitive to that particular food. I came home with a list of 21 things that my body didn’t like, one of them being wheat/gluten. I was extremely discouraged and had no idea where to start. I decided the secret was in the labels! I started reading them like crazy!! My grocery trips, instead of taking an hour or two, turned into a “Gilligan’s Island” type scenario! It took me FOREVER! But really I wouldn’t trade it for the world now! I am feeling so much better and am pretty much back to normal. My kinesiologist has been so WONDERFUL and I am so glad God led me to him! He has helped me in a number of ways.

Two years later I really feel that I am on my way to complete recovery and my “normal” days far outweigh the ones where I don’t feel so hot! Truly, though, I think that being gluten free is now just going to have to be a way of life for me. I am ok with that now and would LOVE the opportunity to help others through their journey as God sees fit! I also love the fact that…like you mentioned with your snacks…I am eating more healthy now than I ever would have before!

My Story

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My “stomach troubles” started when I was a little girl. I have so many memories of horrible stomach pain and boughts of diarrhea. My issues seemed to get worse the older I got and I was told I had Irritable Bowel Syndrome (IBS). Throughout high school and college I would have extreme swings in symptoms, calling it all IBS and attributing it to stress and the busy lifestyle of a student. This pattern continued into my marriage and even after having my children. I was on different prescriptions for acid reducers and tried to be careful of what I ate, trying not to trigger the symptoms. It was in recent years that I started having extreme pain on my upper left side and my symptoms seemed worse. I was miserable. Always having some sort of discomfort whether it be nausea, diarrhea or constipation. On top of the stomach and intestinal problems, I was having a lot of skin irritations. Rashes and flaky skin on my hands, face and various spots on my body. I was also having major mood swings and boughts of depression. Headaches were another big issue for me. I had been to many doctors, had various tests and multiple rounds of blood tests. On paper, I was a very healthy person – but I felt HORRIBLE.

It was a Sunday morning and I woke up feeling pretty good! Better than I had in days or weeks. I grabbed a quick whole wheat bagel for breakfast before church and before it was time to leave, I felt completely awful again. Something clicked and I told my husband that I was going to go off wheat/gluten and see what would happen. By Tuesday, I felt like a new person! I had an immediate response of eliminating gluten from my diet and had a week of feeling the best I had in months. I was totally surprised and quite overwhelmed. My mind started spinning of all the foods I wouldn’t be able to eat and HOW WAS I GOING TO DO THIS LONGTERM? AH!

I made an appointment with my Doctor to see about having the celiac bloodwork panel done. Of course, I had to go back on gluten for at least a few weeks before I could have the test. I was dreading it. The only positive I saw was that it was Thanksgiving week and if there was a week to have no dietary restrictions, this was it! So, back on gluten I went. I finally went in for the screening, going back off gluten that very day after my blood was drawn. My doctor had explained that the bloodwork was just a first step, a step that can come back with unconclusive results, and that the true test for Celiac was the upper endoscopy with biopsy. So, when my labwork came back and the Celiac panel was normal, I wasn’t surprised. I did have a Vitamin D deficiency, which can be a result of Celiac. My Doctor referred me to a GI Doctor to discuss the upper endoscopy. I decided at that point that the test was going to cost more than I wanted to spend and that I was at peace with just sticking with a gluten free diet. I’d consider the test down the road if it seemed necessary.

I have been completely gluten free since January of 2011. Since that time, I have seen a GI doctor (different than my first referral) and have reviewed my many lab results and discussing in depth my symptoms. Since I started experimenting with a gluten free diet, my Uncle (my Mother’s brother) has been diagnosed with Non-hodgkins lymphoma, which began in his stomach. My Grandmother (my Mother’s Mom) died from this disease and had years of “stomach troubles” without ever being tested for Celiac or wheat sensitivites. They didn’t do that 25+ years ago! The pattern of cancer in my immediate bloodline has raised flags to her. Also to my surprise, she noticed a pattern of elevated liver levels and explained that can also be a sign of Celiac. Your liver can function incorrectly because of the strain that gluten puts on your body. We reran bloodwork since I had been living gluten free for months and surprise – my liver levels are completely back to normal. It seems that being gluten free is doing by body good! My GI Doctor would like to see me have the biopsy’s done so we can have a concrete diagnosis. I do see the benefit of knowing for sure if I do in fact have Celiac. It’s quite a difference to just get a stomachache from something and to have an auto-immune disease that requires a complete lifestyle change. I also feel it’s important to know for my children’s sake.

So, at this time, I believe that I do have Celiac disease, it is just unconfirmed by the biopsies. I am leaning towards having the test and just need to decide when I can afford to be back on gluten and possibly feeling awful for a minimum of 3 weeks. If it can work out, I hope to do all of this sometime this summer.

Are any of you on a similar journey? I’d love to hear from you! Are you considering having the biopsies done? Be in touch!