Robinbird's Blog

Oh my, where do you live? If you live near me, come to my house and I'll feed you, seriously. I'm in the Dallas, TX area.

First of all, the corn flakes and the granola bar probably had gluten in them. Almost all of the mainstream cereals have gluten in some form - usually barley malt (often listed as just "malt").

Start by eating simple things like meats from the butcher section of the grocery store and fresh fruits and veggies. Cook them simply until you find out which spices, etc. are gluten-free. Make yourself eggs and bacon for breakfast, but check the bacon for gluten. It's usually gluten-free, but some companies will slip some gluten in there sometimes.

This site has a wealth of information and was a lifesaver for me. I found the "safe" and "unsafe" ingredients list here, printed them out and checked every item in my kitchen against the list of ingredients on the labels. I threw out or gave away anything that had gluten in it. Then I took the lists with me to the grocery store and read every label of everything I wanted to buy. Clean all of your dishes well and get a new toaster if you plan on toasting anything in the future.

Click here for the lists:
 

 

And here's some info about oats. My family and I eat them:

https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/ 

While on either of those pages look at the list on the left of the page. There are lists of doctors that can help you (if there are any in your area), recipes, restaurants that offer gluten-free, etc. You need to read, read, read and educate yourself. And you need to be completely gluten-free, not just partially, or you will not get better. Ask the doctor to check your B12 vitamin levels, too. Having low B12 levels can cause the extreme fatigue you are describing. If you're low, you can get shots to boost the levels up to normal and then take a sublingual (melts under the tongue and absorbs into body) supplement. Since you're body is so damaged by the gluten, you are probably not able to absorb the nutrients and vitamins that you are ingesting. So even if you swallowed a pill, it wouldn't do you any good.

I replied to you, but it doesn't show up. Maybe you don't have the reply feature enabled or something. Check your personal page to see if it showed up there.

I feel your pain in regards to the doctors misdiagnosis. I am 35 and have had symptoms for 20 years. I've seen 5 GI specialists. I've been on every nasty laxative out there. I have been accused of being anorexic (5' 11" and ranging from 116-128 lbs), these comments prevented me from seeing another doctor for 10 years. Then in 2004 I went to a gastrointestinal specialist. I told him that I have a family history of celiac (an aunt who had recently tested positive at age 60 after being so anemic she required a blood transfusion). He told me that celiac was not necessarily family related, diarrhea is the most common symptom (mine was constipation). He did a colonoscopy but no biopsy. He only blood tested me a year later after I persisted that I was much worse on a high fiber diet (I was eating so much fiber the whites of my eyes were brown). I was extremely distraught from feeling so bad. My stomach was so bloated I was doing pregnancy tests. During this time the Adkins diet came out (high protein/fat, low carb) and my symptoms went away for the most part, so I again queried about celiac. He decided to test me after a year for the anti gliadin AB and the anti endomyseal but both were negative, which further reinforced his diagnosis (unfortunately when he tested me when my diet had no carbs). He looked me in the eye and in a snappy tone told me that "There is nothing wrong with you, Miss Morris"...other than his diagnosis of "severe irritable bowel syndrome", I guess. He even doctored my records to say I responded to a high fiber, low carb diet (this is a contradiction in terms). He was convinced all my problems were from not eating a high fiber diet. Over the years I've learned to game my diet; however, my fatigue, constipation, angular chelitis, irritability, carpal tunnel, swollen sinus turbinates, etc, etc, etc came back when I started to eat wheat products (sun chips, frosted mini wheats, etc.). In my military career, I was an educated health care professional, a medical technologist, so I went back to a new doctor and specifically asked him to test me for celiac, he added the transglutaminase test, which came up abnormal on me. I do not have a final diagnosis yet, but I have another appointment with a gastroenterolist this week (which I am dreading), who will hopefully do a biopsy. If I get a final diagnosis of celiac, then I do plan to write my state's board of medical examiners and my insurance carrier on this particular doctor. At a minimum I will ask that my insurance carrier be reimbursed for my medical expenses, and recommend to the state board require this doctor to get continuing medical education on celiac disease. THen I will consider monetary compensation depending on how this affects my current circumstances and health. For example, I have a 2 year follow up bone scan, if my osteopenia has progressed to osteoporosis, if I lose my military scholarship because this is a condition that prevents me from going back into the military (I was active duty for 11 years and got out to go to veterinary school). I was under the care of this doctor when I was active duty. I have VA claims and a retirement on the line because of his misdiagnosis, etc. If you get a lawyer, I recommend finding a reputable (board certified for medical malpractice) lawyer who is not an ambulance chaser (you can probably find these by doing internet search or querying lists from state legal professional organizations. Luckily my brother is a lawyer and can advise me if I get to that point. I want to reassure you that there is hope for you. There is life after your celiac diagnosis. If you can get on the proper diet you will begin to feel better and think clearer. When I was college age I had high aspirations of going to medical/veterinary school. While I managed to make it through under grad, I knew there was no way I had the energy to go on to higher education. I felt so bad, mostly because of the weekly migraines I was experiencing. I did go into the military. After two sinus operations (to remove hypertrophic turbinates, which I beleive are cause by the gluten allergy), my migraines went away. With the adkins diet I began to feel better so I decided to pursue my dream of going to veterinary school. I will graduate in 1.5 years as a second career student. I've been married for 10 years to a husband that likes "skinny" chicks, who had always accepted me for my lack of energy, low sex drive, pale skin, irritability (he should get a medal). I do not have children because I never felt that I had the energy for them, but I do have lots of animals. Anyway, hang in there and don't give up.

I know where you are coming from and it all sucks. I am 38 and was dx in June. I have headaches, moody like a witch , brain fog, lose everything, can't focus, can't slleep and the fatigue is killing me. I have three children and a hubby who think I am crazy. My hair is falling out so bad that I will have to go get a wig. So I feel for you. I thought I just had to bacically stay away from bread and pastas. Only wish, there is like 100 ingrediants that we can't have. Gluten is everywhere. My advice read, read, read! That is all I do. This site is great for advice and finding new foods. I eat alot at home, even though restraunts try their best I still feel sick most of the time after eating. And no you can't have frosted flakes! There are many books and sites to go on to find out what to eat. It has been 7 months and I still can't figure this thing out. I can have wine, life is good. Take care and good luck.