This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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I just sent this list to a friend who asked about my symptoms. Reading through it I realized I had forgotten a few symptoms, but I think you get the gist.
Although our list of symptoms might have similarities, remember that no two Celiacs will present with the same list of symptoms, and some have no symptoms at all.
Is your doctor checking for IgA deficiency? Total IgA should be part of a complete Celiac panel, but different labs offer different types of tests. Not to mention different skill levels in interrupting the tests.
At Diagnosis (Sept 2004):
chronic abdominal pain on right sideconstant bloating and abdominal distentiongasintense gas pain that was chronic and worsened after eating (the higher fiber the food the more intense the pain)nausea (just raising a spoon to my mouth would trigger the nausea)dizzinesschronic joint, muscle pain & weaknesschronic fatigueinsomniamood swings and anxietychronic headachesproblems with memory and brain foglactose intoleranceconstipation and diarrhea (everyday was something different)
Chronic abdominal pain on right side & constant bloating and abdominal distention: Within 2 weeks of going gluten-free these symptoms went away
Gas pain, gas, nausea and dizziness:
Slowly improved over the course of about 6-months ...But, it would come right back if I ate a serving of high fiber foods like broccoli, apples, salads and popcorn.Not being able to tolerate high fiber foods took several years to improve
Mood swings and anxiety, chronic headaches, problems with memory and brain fog, lactose intolerance, constipation and diarrhea:
Somewhere between a year and 18-months, I had notable improvement in these areasThe lactose intolerance did go away, but even lactose free products (i.e. whey isolate) give me headaches so I finally admitted that I need to just be dairy-free, and I feel much better.Chronic joint, muscle pain & weakness, chronic fatigue, insomnia: These actually got worse after going gluten-free but within 2-years into it I was experiencing relief from these issues. I couldn't believe how amazing I felt. It really sunk in that had I been sick for a very long time, because I never before lived without pain. And now I do. : )Head & hand tremors surfaced shortly after going gluten-free.
The more tired I was the worse they were.The tremors improved as my chronic fatigue improved.
Hope this is helpful.
A Must Read: I must suggest a book, it is Real Life With Celiac Disease. It is a new book, with the most current medical knowledge available.
Recovery: All of your symptoms could be related to Celiac. Length of recovery does depend on how much damage your body has to repair. The whole body healing that your body needs is really quite amazing, and until your intestine has time to heal (which requires NO gluten exposure) even digesting gluten-free food will be a challenge. You should start to notice small improvements soon, in 6 months you will feel considerably better, and in 18 months you will be amazed by how great you feel. But the healing takes time, which is something very few doctors understand.
Food: Be sure not to underestimate the potential for other food intolerances. Dairy is notorious for causing inflammation and digestion problems. Removing dairy can be a great boost to your healing process, as can adding in foods that reduce inflammation and promote healing. Foods like ginger and turmeric are wonderful for reducing inflammation. Also be sure to note that your intestine will have trouble digesting high fiber foods for a while. Things like fresh fruits and veggies can be a source of digestive problems. But, you really need to nourish your body with these foods so eat them but consider the following solutions:
Make smoothies at home with 6 oz of water, 1 serving of brown rice protein powder (plain or vanilla), a handful of fresh berries, a tiny little sliver of fresh ginger root, a handful of fresh baby spinach (I promise you wont taste it), a small pinch of clover sprouts, a dash of turmeric & a handful of ice. The blender helps break down the food so your body can more easily digest it and make use of the nutrients. Be sure to sip the smoothie slowly, drinking it over the course of about 20 min or more. Par baking apples & pears is a great alternative to apple sauce. Just cut the fruit in half, sprinkle with cinnamon and bake at 350 for about 20 min. You don't want to over cook the fruit and lose the nutrients, just cooking them long enough to help break down the fiber is all you need.
Cross Contamination: Be sure to evaluate how gluten-free your diet is. Toasting your gluten-free bread in the same toaster used for gluten bread, cooking a gluten-free pancake on the same griddle with gluten pancakes, cleaning kitchen counters with a glutened sponge, sharing water with someone who is eating gluten, kissing someone who just ate gluten ... these are all cross contamination.
If you need more info or help or anything, just let me know.
1) Because there are no laws that define what "gluten-free" means. So, a product labeled as gluten-free is not guaranteed to be gluten-free. It is against the law for the food companies to lie to us, but until a definition for "gluten-free" is put into law we have to contact the companies that make the food and go from there. 2) Amy's might test their products labeled gluten-free to ensure they are truly gluten-free, in-spite of the potential for cross contamination, but you would need to contact them to find out.
When I buy processed foods, I only buy foods that are certified gluten-free by GFCO, unless I have recently (within the past 6-months) spoken to the food company and confirmed the gluten-free stats of the food to my satisfaction.
If you do contact Amy's, let us know what they say.
I agree. It sounds to me like you where diagnosed with Celiac, no need to retest unless you want to know that your efforts are paying off. Keep in mind that very few doctors understand Celiac Disease or the testing, and they certainly don't get the gluten-free diet.
There is a new book that will be a godsend for you. It is called, Real Life With Celiac Disease. I have read all of the other books and this is by far the best. It even has a chapter to help you understand the testing. You can Google the book title and find the best price online.
I know exactly how you are feeling. I felt that way for a long time. Thankfully, I figured it out and have never felt this good.
You know what to do, but I think you are too close to it to see the answers. Granted, I have met many nutritional consults who don't know squat, but I suspect you are not one of them. The solutions to all of your problems are within you, just waiting to be acknowledged and followed.
So, the following is simply to help trigger the knowledge within you, not to suggest that you don't know all of this already.
Foods are the best source for the nutrition our bodies need, so a few daily supplements make sense (one of which I hope is a pro-biotic), but "a ton" tells me your diet is not nutritionally sound. What foods are you eating that cause the bloating? Either both, gluten and dairy, are still getting into your diet, and/or you are eating too many simple gluten-free carbs and sugar. Do you keep a food log or diary? I suspect over training and not enough of the right foods as the cause of the tendonitis and exhaustion, not Celiac. The right type, frequency, and intensity of exercise will reshape our bodies, but it is only 10% of it. Diet is 80%. Over training will only lead to injury and exhaustion. Do you keep a training log or diary?
Like I said, I have been in your shoes and it wasn't fun. I wanted so badly to feel normal, and to have something other than my pain to think about. In the end, eating clean was and still is the answer for me. I highly suggest getting Tosca Reno's Eat-Clean books, they changed my life and I know they can change yours as well.
I remember how overwhelmed I was at first as well. I promise, you will be a pro in no time if you take the time to educate yourself (Read Living Gluten-Free For Dummies and/or The Living Gluten-Free Answer Book. They are great books, even for people who have been gluten-free for a long time.
I agree with the other poster, don't use gluten-free oat products for the first year to 18-months. After you intestines heal, you can try gluten-free oats in small amounts and see how it goes. I eat gluten-free oats almost every day, but I have been gluten-free for 5 1/5 years, and they didn't even have gluten-free oats until a few years ago.
You might also find it difficult to eat raw apples and other fibrous foods. There is a great book titled, Breaking The Vicious Cycle that can help get you through the healing process.
In the meantime, try Bakery On Main gluten-free "granola". It is more like a cereal to me, but it is really yummy.
I know 5-months sounds like a long time, but if you are Celiac then your body is still healing. Top that with foods that are notorious for creating digestive problems, i.e. chili, and you are in for a world of hurt. Corn is also a culprit as it is a highly contaminated crop, like oats.
Now, I wouldn't touch Hormel Chili with a ten foot poll. I know they say some of their chili products don't "contain" gluten. But, that doesn't mean the raw materials (i.e. corn flour) are not contaminated, nor does it mean their production line is not contaminated.
Currently, there are no laws in place that define "gluten-free", the food company has to be truthful and not misleading but they are not required to test their products. Nor are they required to verify that their suppliers are giving them uncontaminated raw material. There is a great article about this in the current issue of Living Without Magazine http://www.livingwithout.com.
You are absolutely right to stay on the diet. I am sure your GI has told you, but you can have blood tests and biopsy's come back negative for Celiac, and still have Celiac.
If Celiac is the issue, 1st) your body must heal 2nd) your body can then utilize the nutrients you feed it and 3rd) only then can your WHOLE body begin to experience relief. It is slow and gradual healing, with slow and gradual relief. Give you body at least 14-months for this process.
Your GI doctor is most likely going to suggest that you stay on gluten until after he/she completes the tests for Celiac. They will most likely want to do a blood test and endoscopy.
Note: false negatives are possible with these tests, and also note that Celiac is just one form on gluten-intolerance.
If you do have Celiac, it will take time for your body to heal and fully recover. Hense, it will take time for all of your symptoms to go away. Once you are 100% gluten-free, you can expect a 6-month minimum for healing time, depending on how extensive the intestinal damage is.
Fatigue is a very common symptom of Celiac. Yes, it can be lack of caloric consumption but more than likely it is because your body is not able to use the nutrients you are feeding it, if you have Celiac (remember the healing time I mentioned above?). However, I think everyone should pay attention to what they eat, so I would suggest tracking to see what your calorie intake is, and if it is contributing (i.e. your not getting enough of the right foods). Try the Livestrong web site. Their "daily plate" feature lets you track your food and suggests daily caloric intake for you. It also provides a pie chart to show you if you need more protein, complex carbs, or healthy fats.
You can up your fiber by eating raw fruits and veggies. I would suggest adding a snack between breakfast and lunch. An apple and 11 pecans halves, for example. Always combine complex carbs (the apple) with protein (the nuts) and a bit of healthy fat (the nuts). Having a small healthy salad (try using balsamic vinegar for dressing) as your carb at lunch and diner, versus fries - which are seldom gluten-free anyway - potato, or rice, will also help.
Fiber will help you feel more full, but for energy you want to focus on complex carbs (which contain fiber) and lean protein. Both are used by our bodies for energy. If you are working out with weights (even light weights) you really need to be sure you are getting enough protein.
After going gluten-free (gluten-free) I found that following the Eat Clean principles works perfectly for staying gluten-free, energized and healthy.
You will find master lists in loads of places. Here is the one that Celiac.com published
Check out my web site www.iamgf.com as a great starting point. In the resources tab we have a list of very helpful websites.
Best of luck and if you need help again just holler.
I was diagnosed by blood test and biopsy. But if I had it to do over again I would skip the biopsy. It, as well as the blood tests, can result in false negatives. Which is something I didn't know when being diagnosed, but I also didn't know what gluten was.
His healing time could take a couple years, depending on how extensive the damage to his body is. Personally, I noticed some improvement within 2 weeks and each week I felt a tiny bit better. But, it took about 18-months before all of my symptoms abated, with digestive symptoms being the slowest to go.
It is important to note that each time a Celiac has gluten, they have to start the healing process all over again, even when hidden gluten and cross-contamination are the source of the gluten. And, even when they are contaminated by gluten and don't know it due to lack of symptoms.
Not being a doctor, I highly encourage you/him to walk through the blood test results line by line with his doctor. I have also provided two links below that you might find helpful.
In short, 2-months is honestly not enough time for his body to heal, so it is too early for him to be able to experience the amazing transformation that is possible with a gluten-free lifestyle. Not to mention the prevention (a gluten-free lifestyle) of long-term health complications that follow untreated Celiac.
You might find this article helpful - Diagnosing Celiac Disease and Gluten Sensitivity
Here is a link to a fairly detailed article regarding the tests and reintroducing gluten.