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How it all started...AKA...In the beginning

How it all started

Overwhelmed. ..anxious. ..excited…and a gamut of other emotions are what I felt that day.  Did I hear this new doctor right?  He left the exam room stating “wait here, I think I have something that might help you.”

I was out-of-town for a week when I started with sinus problems on the second day there.  I was in a familiar town, had a former doctor there, but chose to visit a walk-in clinic hoping to be in and out of there quickly.  I knew that going to my former doctor meant possibly waiting days to get in for a visit or waiting a long time in a waiting room, then an exam room.  That may have been the best decision I’ve made.  I had waited 3 days since the congestion began and my ears were still clogged.  I knew I had a sinus infection and prayed that I could get put on an antibiotic, as based on past experience, if I didn’t, it was going to get unbearable and require a stronger antibiotic than I wanted to take.

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I went to a walk-in clinic shortly after they opened for the day.  There was only one other patient there.  So far, so good.  When the doctor walked into the exam room, he was an older man.  Yes, my prayers were being answered…short wait (important because I had a 10 month old with me) and from past experience, younger doctors tend to not want to prescribe antibiotics, but I knew what I needed.  After reviewing my medical history with me...fibromyalgia, Chronic Fatigue Syndrome, IBS, migraines, depression, abdominal pain (blamed on ovarian cysts)…he examined me and determined I did have a sinus infection.  That’s when he said, “I’ll be right back.  I might have something to help you.”  Of course, I’m imagining he’s gone to get me a neti pot and my stomach turns.

He comes back with copies of something from the internet.  My curiosity is piqued.  He explains that he has started giving information to patients that come to him with a history similar to mine.  It’s information about celiac disease.  I listen to what he has to say while I remind myself that I was tested for that about six years prior and it was negative.  Hence, the diagnosis of IBS. He asks me to contact him in about 3 weeks to see how I’ve done with it (note to self, contact doctor!).  Wow, a doctor that knows I live out of state and he wants to know how I’m doing after I try this?  I leave with a prescription for an antibiotic, a recommendation of an OTC sinus and cold medicine, and wondering if this doctor might have the answer for my other symptoms.

Loving to read, I buy the book he recommends (The Gluten Connection) and wait anxiously for it arrive.  I started googling gluten-free and celiac disease.  I realize that I needed to immediately change what I eat.  The information is shouting out at me:  you have these symptoms, nothing else has worked, it can’t hurt to try it.  Okay, it can hurt the food budget, but if I can function better and feel better, it will be worth it.

My next blog will describe what I’ve experienced in the past month since starting to eat gluten-free.

As always, Celiac.com welcomes your comments (see below).


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Celiac.com Celiac Disease & Gluten-Free Diet Forum - All Activity

I use almond, and coconut a lot now my bakery used to use oat and almond blends. We never used rice, or starches as our goal was to keep it low glycemic. Now days we are transitioning to cut out oats. I started having....ok I omitted and gave in after being in denial a similar reaction to oats (10% of celiacs do if I recall) over a year ago. Anyway as for flour blends premade avoiding rice and grains try simple mills at https://www.simplemills.com/collections/all I have composed a huge list of various gluten-free goods here, even recently updated with grain free, and pizza section https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

Hello Everyone, New here and have joined because I couldn't find an answer to my question online. I was diagnosed after a long spell with anemia in 2015 and have been on the diet (and improving!) ever since. But I wonder whether how much rice I'm eating is very healthy. I have always liked to bake and it took awhile to find a flour mix I like (Cup 4 Cup - worth its weight in gold...), but a lot of gluten-free food subs in rice (white rice, brown rice, rice flour) plus I eat actual rice as a side dish. Is this too much? Keep in mind, I also eat salads like it's my job and love making vegetable soups too. Any advice on gluten-free foods (specifically flours) that don't fall back on rice as a substitute? I should add that I can't really get excited about quinoa, despite my best efforts. Thanks in advance.

I would say get retested, to be sure, do a gluten challenge with her where she eats gluten for 12 weeks, not much just a half slice of bread a day or a wheat cracker for the blood test and 2 weeks for the biopsy. You mentioned bumps, and dry patches...this might be DH from celiacs and if it is you can go to a dermatologist and they can test it. In some people with DH reactions to gluten, their intestines do not show much damage as most of the antibodies are directed elsewhere. In this case you would have your symptoms. Now Celiac is a autoimmune disease that commonly has other auto immune diseases associated with it. NOW if your daughter has the gene for it she could have another automimmune disease I am not very familiar with and someone else might be able to help you more on suggestions for testing. Now in my personal opinion it sounds like she was still getting into gluten when you said she was off of it. NOTE gluten is a tricky bugger, it is a protein smaller then a germ that can stick in cracks and scratches on all your utensils, food prep area, knifes, etc. As a flour it can hang in the air for hours and even be inhaled effecting some of us. It is present in a lot of things we do not consider, like makeup, playdough, shampoos, seasonings, sauces, even some dry wall spackles. Now if she is in a shared house hold with other kids and not everyone is on this diet she has likely been getting into gluten somewhere, like touching glutened surfaces the other kids touched after eating gluten foods then putting her hand in her mouth or on safe foods. Or just randomly eating gluten foods, note symptoms can last weeks and wane from how it is effecting you. It does not take much to trigger symptoms you might have to be more careful and move her to a whole foods only diet, and have a separate prep area, utensils, cooking zone for her if you wish to keep fixing separate meals for her vs the gluten family. I would suggest just changing the entire family over, anyway perhaps start with a separate fold out table, use freezer paper to line the prep area, a microwave, mini toaster oven, and some microwave cook ware like steamers, steam bags, etc. and using gloves to fix her meals. She will need her own condiment jars (crumbs in hte jars) and area for safe snacks. I would suggest getting her only gluten-free CERTIFIED FOODS for now. You can find some whole food healthy snacks at mygerbs.com, and a few other places. I will provide a link to gluten-free food list. PERHAPS you can change the entire family over....now days it is more like changing brands as everything you used to eat is available in a gluten-free brand. ALSO have a lot of dairy free options there. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

Hi wondering if someone could help. my daughter has mildly raised TTG levels and the gliadine levels, she has one Coeliacs gene, but her biopsy came back negative. We have kept her off gluten (and low dairy) for nearly a year to see if her symptoms improved. They haven't. But I don't know if they are related to gluten specifically. Just wondering if anyone has other suggestions that may be going on with her. Her symptoms are: - Short stature, she's nearly 9 and my 6 year old boy is nearly bigger than her - bumps on back of her arms - urine leaking and occasional soiled pants, which could be from constipation she has at time's - sticking out stomach - dry patchy rashes on her face - joint pain sporadically - vomits every 6 weeks, but hasn't had gluten and seems to be no food connection - reoccurring thrush She had gluten last night at a party and was fine today. I'm a bit lost and not sure where else to turn. Thanks for any help.

We have gone gluten free, our whole house, as of a month ago. It was pretty seamless since I had been gluten-free for 5 months last year. I have found many good recipes, and my picky husband and one of my boys who is also a picky eater, even prefer many gluten-free recipes to the regular ones. My husband did see my point about the size of the gluten protein means nothing. Its a gluten protein period, that's what you are avoiding. It doesn't matter if its hiding in the scratch of your baking sheet and you can't see it. You can't see the wind, but it's still there. I hear you on the anemia. I've been anemic for several years, I just thought it as because I was getting a little older. Has your anemia gone away or do you still have problems with it?