Here Is My Story, What's Yours?

[learningtobreathe]

Well, I'm new to the forum- and thankful to have found it! I wanted to be able to share my story with someone who would understand, as my family of origin doesn't really understand or "get it." (I do have a supportive husband, but he doesn't really understand it fully, either.)

 

Well, where to start? I've just finished a rough 14 days of constant diarrhea when I ate anything. I'm talking about ever 15 minutes I was in the bathroom- around the clock- for the first 9 days, and then finally it subsided a bit and while I was still dealing with the bathroom issues, they weren't as frequent. At the same time a lovely rash showed up and I had horrible bloating and cramping. It was miserable. I finally figured out that I had been glutened; I don't know how or where as we keep our entire home gluten free, but it had happened. It was awful. I wouldn't wish it on anyone. Thinking about it, my stomach is gurgling and churning. Yuck. It happened right after a really high stress situation - some acute stress, and some a bit more prolonged, but it all coincided. 

 

During this most recent episode, I went to our chiropractor for an adjustment, allergy testing, and some supplements to get me through the horrible ordeal. (I am a natural healing practitioner and utilize these methods first and foremost for myself/my family.) He specializes in nutrition, and I asked him based on the testing if he saw anything unusual or that raised red flags. His response was that I really should never have gluten containing anything again, and that I most likely will need to avoid dairy for a long while while I am healing. I asked him about celiac testing, and his response was that if I wanted to put my body through being on gluten for 12 weeks, I would then be able to go and be tested, but that it likely wasn't worth it based on this most recent exposure. I grabbed my supplements and headed home. I have wrestled with his words for a few days. I have been gluten free for 6 weeks, and on a low-fodmap diet because it was assumed I was dealing with IBS issues. Something about the finality of being gluten free forever was difficult for me to digest. But it made sense. I have had issues with gluten my whole life, but they were either ignored. explained away, or they were not connected to celiac disease by medical professionals, or holistic professionals.

 

My chiropractor (and now I) believes it started when I was a little girl: I had my tonsils removed at age 3 because I got strep at least 8 times a year, I had nasty diaper rashes often- but my mother refused to believe that I was reacting to foods; when I was a teenager I had horrible candida in my intestines and gut, I craved breads and pastas but would either be horrible constipated or have diarrhea; as a young adult I dealt with some pretty intense monthly cycles - they were either awful or non-existant, and my candida continued to rear its ugly head into my college years/into my graduate studies; when I was married and we had our first baby, I started to only eat whole wheat or sprouted wheat- and my blood pressure was sky high, but my doctors continued to tell me that whole grain wheat was good for me and that it was better than not eating wheat. I started to get a rash somewhat regularly on my body, and developed "chicken skin" on my arms from a vitamin deficiency- later that year, I saw a natural healing practitioner who said that my on-going depression and awful mood swings were likely caused by wheat but she didn't want to diagnose me yet, she just wanted me to go gluten free to see how I felt. Well, I was scared and panicked and did it for 2 days before I went back to eating whole wheat. I should have listened to her then! After out first was born, we miscarried 6 babied in 3 years. I was devastated. I thought I was broken, and no one had answers for me- except that maybe it was PCOS or maybe it was because we were following a vegan diet. I started to ponder more about what she had said a few years prior and felt it might be time to go gluten free. So, I went "gluten light"- mostly gluten free but I still made (and ate) whole wheat sourdough bread, sourdough muffins, sourdough cinnamon rolls, etc. for another year or so. I tried eating Einkorn, because I was told that people with gluten issues could tolerate it better than regular wheat. We eventually conceived again and my sweet baby girl was born a year ago. I was gluten free (with very few exceptions) during her pregnancy, and after she was born I ended up having to cut out gluten because I was breastfeeding and she would have horrible reactions whenever I would nurse her and I had eaten wheat. She was diagnosed as failure to thrive while I was still eating gluten and they ran so many tests I felt dizzy doing to every specialist they had us running off to. Her celiac panel came back positive but they wouldn't diagnose her without a biopsy and her ingesting wheat on her own for 3-6 months. I couldn't risk it with her- she was just too tiny and below the bottom 3% for growth. So gluten free is was. And I was really good about it, except for cross contamination after she started thriving again. She had gained enough weight that I thought it was okay to start eating gluten again- and being lax about cross contamination. (I swear, it is like a drug sometimes! But what is harder is that I have fond memories of my mothers homemade bread being made and rising and then eating it warm with honey and butter- and giving up having those memories with my own children was more difficult.) Finally, something clicked 6 weeks ago- well, 8 at this point. I was having constipation and diarrhea off and on, candida flare ups (which happened all along, but have gotten progressively worse with the more gluten I ate), and I was tired of feeling so tired and sick all the time. I hated being "that" mom- the sick one who couldn't ever do anything with her kids or family or friends without being wiped out for days afterward. So, I stopped eating gluten. Our house became a ZERO tolerance for gluten zone, and I started to heal. I felt nourished and not constantly hungry all the time- even after eating a meal. My sinus issues stopped. My tummy troubles stopped. My cycles that I have had were normal... and on and on and on. 

 

Then, the gluten-ing happened. (Probably from eating out at a restaurant that wasn't so good about cross contamination.) And my chiropractor meeting happened. And the rash, and all of the other things. 

 

Bottom line: I don't have an official diagnosis with a stamp of approval from a licensed physician. But I do have my chiro's assessment, and I have my own body's proof. Oh- and my birth family (I am adopted) gave me my family medical history-- that is another piece to this puzzle. Both my birth parents have bowel issues- constipation, diarrhea, bloating (she has been asked when she is due with her baby almost monthly for as long as I have known her-- for 20 years). I've been gluten free for 8 weeks now, and finally feel like I have my life back again- minus the little cross contamination crisis 2 weeks ago.

 

So two questions- is going back to gluten worth the official diagnosis for you? and How do you handle family members who think that this is just a fad and all in your head/made up? My family thinks that this is all crazy and that there is no possible way this could come on so suddenly. It's a bit toxic to be around them sometimes because of the side comments that are made, or being reminded how awful gluten free food tastes/how terrible the texture is from them, or being told that something can't really be bread (or cake or pie, etc.) because it isn't made with wheat flour.

 

I would love to hear you share your stories and thoughts, if you are willing to share.

[squirmingitch]

I wouldn't go back to gluten for love nor money! I did get a dx after the fact but that is extremely rare for that to happen & it was based on symptoms & resolution. My hubs has never gotten an official dx & he would NEVER eat gluten again to get that official dx. BUT we don't have children that may need to be tested and getting testing for them is so much easier if a 1st degree relative has an official dx.

 

I can not answer about the family members as ours are pretty much all deceased now. If they weren't I would stick up for myself in no uncertain terms but that's just me & the way I am.

[Maddi]

I'm still waiting for my blood test results. But I know that I have a problem with gluten. I've been sick with digestive issues for 2 years and then last year my tummy issues got worse with more bowel frequency (up to 6 times) BUT NOT D. Then this spring I started having pain in my tummy, severe anxiety, bad depression, lost weight, dry hair/skin, bone/joint pain, dizziness and headaches. Well I've now been gluten-free for 2weeks (without eating straight gluten) but I have had issues with cross contamination during that time but guess what? I'm feeling SO MUCH BETTER. My anxiety and panic attacks? GONE. My hot flashes? (keep in mind that I'm only 26) GONE. My insomnia? Gone. My all day debilitating fatigue? Gone. But I still have tummy issues, tiredness and some headaches and dizziness on and off but I feel I have more energy than before. (: I'm still awaiting diagnosis but either way I'm NOT GOING BACK TO GLUTEN. It made me feel like I was dying. Im the past months I've gone to the hospital numerous times only to be asked if I'm anorexic and to be told i have nothing wrong with me. I'm down to 93 lbs when I eat 5 times a day!!! I'm still extremely hungry after meals but hooe that will get better with time.. once my body is nourished. I'm done with doctors for now. I pray to God this is my problem and that I gain weight in the next few months. (: I'll tell you this... it will most likely be easier for you to get compassion and understanding if you are diagnosed but hey what mattera is YOUR HEALTH. And if you feel like gluten is making you sick then just stop eating it. I hope you feel better soon!

[Lucykae]

My story is: I had to go on a gluten-free diet one year ago due to abdominal pain, bad, stinky flatulence and very stinky diarrhea. When I went onto the gluten diet the abdominal pain and constant cramping and stinky diarrhea and flatulence went away. I also had to eventually give up all dairy products, even goat cheese and goat's milk. The thing is, everytime I got the bathroom, I always dump a little diarrhea. I also pass oils/fats---cannot consume much fat anymore---and I've lost 20 pounds. Since the not being able to absorb fat very well, I'm having to wear Poise pads because of accidents. Otherwise, I'm doing good. Wish my gut would heal. Oh, word of warning to all: do NOT eat red popsicles! Oh, my!!!! I didn't realize that red dye 40 which is in red popsicles, Skittles and other things, could cause such problems. After a couple of popsicles over a few days---well, those little monsters set me back to the beginning. Took me nearly a month to get back to what I consider nearly normal now.

[kareng]

Red dye shouldn't contain gluten. It could be a problem, but it doesn't mean gluten

[ThankYouFromJane]

I've just found this website and reading through how others feel made me start crying. I'm not so alone.

Im a 16 year old girl, diagnosed with celiacs a year and a half ago, and have been trying to deny it ever since. I have strong symptoms so eating gluten anyway was never an option, my parents and I have been taking the new gluten-free diet very seriously but nothing is ever completely safe. Since then I've been struggling with the social restrictions, embarrassment at my restrictive options, getting sick no matter how careful I think I'm being, letting myself get sick because my parents look so proud at what they made as a solution, and eventually anxiety with every single meal. I was terrified to be asked to choose a place we could go to dinner that wouldn't make me sick, which recently after trying everything means nowhere, so I make my own dinner and then go out and sit and watch my family eat real food. I can't expect my friends to be constantly thinking about it and remember it so I'm often leaning away from their sandwich or whatever, watching the crumbs scatter closer to my food and silently panicking. I didn't know anyone who shared these problems, I let myself get depressed, stressed myself out to the extent of my general Heath declining on multiple occasions, feared food, and I felt ashamed of the imposition on my family and friends for having to go beyond out of their way to accommodate my illness. 

Last month my gastro diagnosed me with IBS also and instead of looking into what that means I avoided it and pretended it didn't exist. Similarly to when I was aware of celiacs, I googled it once and then avoided anything to do with it. I'm no longer known for my skills or characteristics but instead for this disease that I don't feel comfortable with myself. I have no option but to tell those around me when I have to constantly refuse offerings of cookies and crackers and pretzels and all the things teens eat when they hang out. It's my terrible secret I can't afford to keep.

I'm doing my best but seeing others writing out the things I've been trying to hide for months is the most amazing feeling. Others that are putting it into words that I understand and can relate to like I've never been able to before. Thank you for sharing, it means more than you know.