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
The rashes could very well be an auto-immune reaction from an unknown food intolerance. I have the same issue with my weight, lost many sizes over the last few years. The bloating sounds like it could be SIBO to me. I went to see the leader on this, Dr. Siebecker, and it's something many Celiac's will have to deal with along the road to healing. Read up on it - perhaps you could use a diet change such as the SCD or GAPS diet to better heal your problem.
I think a lot of the fine members of this community have already touched in what I wanted to say, but I just wanted to say you're not alone on your battle. I have been a diagnosed Celiac for three years now myself, only 26 years old, and have been trying to get my entire family on board ever since. I understand completely the frustrations, but as BubbasMom mentions, all you can really do is EDUCATE and allow your loved ones to come to the right decision on their own.
My dad is just as stubborn when it comes to acknowledging Celiac's or the possibility that it's the cause of his many problems, past and present. Some people, even your own parents or siblings, are just set in their ways - even if their health depends on it. I think we all know just how addictive gluten-containing foods can be, and how this country practically runs on them. It's convenience, taste, and a cheap way of living. Accepting the fact that they might have to change their entire way of living and thinking when it comes to food may be more then they want to face.
In the case of your sister, just let her know she isn't alone. My brother took the panel himself, only one year older then me, and tested negative. He's much smarter then I in many ways, but when it comes to food, he just won't give up wheat. My mother is in the same boat, but is the only one who's taken initiative like yours. She has taken the time to make some diet changes, albeit slowly, but she wants to change for her health.
When it comes down to it, you just have to give them their space. I know it's hard to watch your loved ones suffer when you KNOW in your heart what is causing their problems, but they need to come to the decision on their own. Just be a great sister, a great daughter, and most importantly, an educator! Over time they may change, and if not, it's something both they and you may have to live with. One of the saddest examples of this that I've encountered is a Gluten Free Registered Nurse in town where I live. She educates people all over, raising Celiac awareness, consulting with them, and so much more. Personally, she's made an impact on my own life. The sad part? Her own mother is a Celiac in denial, and just doesn't care. She has broken many bones due to Osteoporosis, had many other Celiac related issues, but would prefer to eat whatever she likes, despite the fact that her own daughter is a Gluten Free RN.
I wish you the best though, as I know I myself will always be in this constant battle with my family, but after visiting them this summer I've realized that all I can do is teach them certain things, and allow them to decide what they wish to take on.
Yes, I've been taking probiotics for 2 years now, using different ones along the way to see which affect me better. Currently taking SolarRay Multidophilus 20k beneficial strains as per orders of my doctor for my Lyme treatment. Taking three antibiotics now, Doxy, Amox, and Rifampin, so probiotics to hopefully help with the loss of bacteria. I find it odd though because if you take a course of antibiotics every day how can the probiotics hope to flourish. I've heard of VSL, a lot of good things to boot, but it's much too pricey for me unfortunately. Just Rifampin alone broke my bank. I agree with the GLutamine though, even though I eat tons of cabbage which is naturally high in it.
As far as Lyme testing, I forget the particular one but it was an IGA test that showed my body was indeed making antibodies to the lyme bacteria, so with that knowledge and my clinical symptoms my doctor decided to go ahead with treatment. Lyme has already done some damage to my nervous system unfortunately, particularly with the circulation in my hands and feet. They get extremely cold compared to the rest of my body and will remain almost frostbitten in cold weather. It's a lack of circulation caused by the Lyme. I also have other issues with joints, heart arrythmia, etc. I believe I do indeed have it, but my biggest concern has been whether or not it's at the frontline of my symptom picture. I feel that SIBO is my biggest problem, and has grown so far out of control that the bacteria are eating the majority of what I intake. I can't afford to lose anymore weight for at this point I can't even sit in a chair without pain on my butt because the fat is just gone. I am planning on trying GoldenSeal for the treatment of SIBO and seeing how it goes. Other then that, my diet is generally meat and veggies, but without being able to tolerate many foods I cannot seem to get what I need for weight gain.
Thanks for the responses, I appreciate it! As far as Lyme goes, I was taking Amoxicillin and Doxy together for 2 months with only a continued worsening of symptoms, most especially my digestion. I was working with a Naturopath and the next step was to take Amoxy, Doxy, AND Rifampin together as she suspected perhaps it was Bartonella. Unfortunately, I'd gone under a lot of changes in the last few months, become depressed, and generally much weaker all over. My sleep is fragmented, I'm 124 pounds and still can't put anything on, etc etc.
When it comes down to it, I just felt like something HAS to change in my diet because I've become intolerant to so many foods. Just eating a healthy Paleo breakfast of lean beef, kale, and cabbage with coconut oil would make me tired. I continue to react to foods nobody should react to most likely due to leaky gut, etc etc. My concern here has been fixing my digestion as without properly working digestion, nothing will ever get better.
So to bring it back to the main point: You don't think I have a chance of recovering unless I go back on a heavy antibiotic treatment? I just can't help but feel like it did me more harm then good. I was going downhill slowly before I found out about having Lymes, but once I started my treatment I felt like everything got much worse. I'm just dying for some guidance in terms of diet and weight gain during this period. I've tried the SCD diet, the GAPS diet, you name it. I'm pretty certain I have SIBO and yeast issues, so sugars like Honey or even coconut water will make me gassy and fatigued, cutting out a lot of the foods you can eat in a great diet like the SCD. I cannot tolerate nuts, homemade yogurt (not even goat), any form of cheese, etc. When I came upon the elemental diet I thought this might be my last hope for recovery and weight gain, but this weekend I received my samples of Absorb Plus and turns out they gave me a massive headache, probably from the WHEY protein.
I plan on trying to get back onto my antibiotic protocol this week, adding in Rifampin, and will find a way to get the cost covered as Rifampin is very pricey. This disease is one expensive disease to treat, added upon being gluten free, etc. Any suggestions for a diet I can follow during this time that would help me gain weight and minimize creating new food intolerances would be great!! If I won't get rid of any intolerances until the suspected Bartonella is eradicated then that's the next step I will take.
I'm looking to start an elemental diet to help my poor digestion finally start healing and was hoping for some suggestions. I've looked into the ones from Nestle like Vivonex, and I've even found one called AbsorbPlus which looked promising, but the problem is they're extremely costly. AbsorbPlus for example is $60 for a 10 serving tub. If you're attempting an all out elemental diet that's not even two days worth of food for $60. Does anyone happen to know of any that are acceptable as a diet replacement, but actually affordable?
I'm currently trying the GAPS introduction diet to help cure my many food intolerances and heal my leaky gut, but it hasn't gone too well so far. I'm left very hungry throughout the day eating just vegetable soup and probiotic saurkraut with homemade beef broth. I have developed too many food intolerances to take advantage of the SCD diet, and I was previously Paleo but have developed a food intolerance to many of the foods I was consuming. I am not only a Celiac, but was diagnosed with Lyme disease which I'm currently not treating as it's too expensive My digestion has gotten to the point where I have undigested food in all of my stool, and cannot digest most of my meals, even simple ones are beginning to be too complex. I take Enzymedica digest enzyme with every meal, but it doesn't seem to help any longer. I don't consume any grains or starches anymore, and I tend to consume only well cooked vegetables that I can actually tolerate with homemade stock. I have developed intolerances to many commonly eaten foods over last summer, and it's been a downhill battle since. On top of it all, I cannot put a stop to the weight loss. I've gone from 155 pounds 2 years ago, to nearing 120 pounds today. I haven't an ounce of fat left on my body, and it's rather concerning. Without being able to consume any nut butters or digest typical foods for weight gain I haven't been able to get anywhere. I feel as if an elemental diet is my last hope for healing my digestion, but I cannot find a formula!
Any help would be appreciated. Thanks for reading.
I would also recommend looking into Lyme's disease. I too have had a suppressed WBC count since I was diagnosed with Celiacs, and I ended up finding out the real reason for this was Lyme's disease. It's unfortunately pretty common for someone with Celiac to also have Lymes. This comes from a tick bite of course, but can remain dormant in your body for a long time as it did for me. It's rather difficult to diagnose, but if you have certain symptoms or issues that cannot be explained it's worth looking in to.
You may want to look into SIBO, actually. Small Intestinal Bacterial Overgrowth is an overgrowth of harmful bacteria in your small intestine and feeding them sugar of any kind can certainly cause unexplainable bowel issues. This condition is very common with Celiac's disease, and is currently something I am on the SCD diet for. Sugar is a big no-no, and even fruit will cause symptoms =(
I feel your pain Scarlett. Although I was diagnosed with Celiac's disease a year and a half ago, I too have continued to suffer the complications of the disease. I've also been dealing with SIBO along with a newly diagnosed Lyme's disease as well. I'm also only 25 years old myself and understand how rough it is when you once felt healthy, but now so sick. I know just how you feel, and often times it's hard not to just give up, but there's always a light at the end of the tunnel! Adhering to a diet that your body can tolerate is the best advice I could possibly give you. If you're not already following the SCD diet (Simple Carbohydrate Diet) then I would recommend you check it out at: http://www.breakingtheviciouscycle.info/
You can also check out: http://www.siboinfo.com/ This is Dr. Siebecker's website, someone who has dedicated much of her profession to treating SIBO. Knowledge is the key to dealing with SIBO, Celiac's, and then some. I would also try to find a support group in your area and lean on you friends and loved ones when you feel down. This forum is also always a great place to find those who are in the same boat of you and can offer great advice.
I wish you well and hope that you find the strength to get through this!
This diet is crucial in recovering from SIBO and would most certainly help both Celiac's and Crohns as well.
Look into Country Life's Power-Dophilus, link below. I've used this and Dr Ohira's probiotics and honestly prefer Country Lifes. It's completely allergen free, dairy free as well as I have issues with dairy and soy myself. Last but not least, it is very effective. I've had considerable healing thanks to probiotics, especially in the food allergy area. It reduces symptoms greatly ;]
Thank you all for your wonderful, detailed responses. Fortunately I've been so busy with my girlfriends graduation and her family coming here that I didn't have a single second to focus on my health :] Its refreshing really.
Much thanks for your response! I have recently segregated our cooking equipment and even a separate sponge, something in which was long overdue. She no longer brings gluten into the house, but she does consume many other allergens of mine so I have identified that I need to treat them the same. Thank you for all the tips, I will investigate all of my soaps, shampoos, and so on more thoroughly!
You sure have been through a lot! Thank you for sharing your experience. I was not tested for fat malabsorption, but I too found that when I attempted a high fat diet I was having more trouble them ever. Evidence did indeed point to this being a problem so I've cut back my fat intake and really haven't been able to address the underlying issue other then with diet. My doctor really didn't offer me any help on how to address much of anything so its down to what I learn from my peers and on my own. I have considered adding Betaine HCL to try to get stomach acid production up to normal levels again despite my doctor advising against it as he doesn't have the capability to test my acid levels anyway. I'll have to look up Creon tho, interesting. I've used a few different enzymes before, currently Maxi-Zyme from Country life, and none have been too effective thus far. I have found a difference when using one and not using one so they are indeed helpful! I wouldn't listen to probiotics being useless either as they are probably the single most important thing for restoring our healthy flora. Thank you again for your help!
Very interesting read about sugar, thank you! I've experienced first hand the negative effects of sugar on my body these days and have taken it out of my diet. It is extremely difficult at first, but I found the cravings to subside little by little, and stevia helps a lot ;] The only thing I don't like about fighting off Candida in particular is having to give up fruit all together for now - I loves my fruit! Thanks for the info.
Thank you for sharing your knowledge! I do indeed have a Candida issue and have been avoiding all sugars and starches for a few weeks now. Along with drinking Pau'da Arco tea I've seen a change for the good and a lot less thrush on my tongue. I believe I am slowly beating them, but I'm not sure if this tea alone will defeat the yeasty beasties. I know its unpleasant to read, but my stool has changed from its usual soft, liquidy form to actual formed stool after all this time. I believe I am finally on to a road to recovery with the candida diet ;]
I did in fact get him to test my vitamin levels during my last visit, but I'm well aware that I need a new doctor. Fortunately I will be moving back to Portland at the end of summer and will be able to see the doctor who originally diagnosed me with Celiac's again so I will be in good hands! We checked up on Vitamins A, E, D, Ferratin, Folate, and B12 I believe. Each one was at a normal range so I don't seem to be deficient in anything we've found yet. I believe the majority of my remaining symptoms are stemming from Candida overgrowth as it has gotten to the point where I'm now avoiding commonly eaten foods like Carrots, onions, and anything else I'd eaten a lot of as I've developed an allergy to them. I feel once I lay down the law on the Candida I will see food intolerances slowly lift and a leaky gut finally repaired.
Thank you once more to everyone who continues to contribute - I take all of your feedback to heart! I learn best from my fellow Celiacs and through the experiences shared by others so I thank you for your time.
I've never had a problem with Planters nuts, but Blue Diamond definitely causes a reaction for me every time so I had to drop the almonds I haven't seen any brands around me that sell any safe ones either so I hope someone can shed some light onto this. Ordering them online can be really pricey with shipping =(
Sorry to hear about the vitamin issues, in the same boat myself. Finding the root cause of the acid reflux and not just covering up the symptoms with medication is the most important thing you can do. Unfortunately the majority of conventional doctors will send you away with PPI's no matter what symptoms you're having so you need to be assertive and attempt to find out WHAT is causing the acid reflux so you can determine the right approach. As you've experienced yourself these drugs taken over the long haul will only add to your problems (unless you have an ulcer, which they can then help the healing process by stopping the acid.) There are many changes you can make like eating smaller meals, avoiding acidic foods like tomatoes, coffee, etc, and you could try taking a tablespoon of Braggs Apple Cider Vinegar diluted in water with every meal. This helps increase production of acid in the stomach which is what you want so that food is properly digested. The action of PPI's kills the stomach acid therefore leading to a low production, and the problems eventually snowball
As far as a good gluten free multi, I'd recommend Country Life Liquid Multi-vitamin. It's the one I was recommended when I first came on here 9 months ago and it was a huge help in regaining my energy and helping the healing process. It's very complete and if purchased online it's about 15-20 dollars which is good considering you'll get a month or so out of it.
That sounds great! I am yet to see a corn based version of pasta myself, but I'd love to try it. I'll also have to try commending every company I usually buy from so I can get in on that sweet generosity they showed you
Have you ever tried Tinkyada? I've tried a lot of pasta myself once gluten free and none have come close to Tinkyada's brown rice pasta. It has the perfect texture and I personally prefer it over the wheat pasta I used to eat. Don't hesitate to try it if you're a pasta fan!
Don't give up bud, hold on to HOPE as tight as you can. I am only 24 years old myself and in the exact same situation. I know all too well how depressing it can be, but it DOES get better, and like many of the great people on these boards have told me - celebrate the small victories, don't dwell on the losses! This community is a wonderful support group and chock full of amazing knowledge. I know I can't make it alone, nor do I expect you to, so continue to reach out and there will be a helping hand to guide you!
There are many things that should be looked into like vitamin levels, candida overgrowth, leaky gut, all that jazz, but I think what's most important is exactly what Irish Heart said - take that advice to heart. The best thing I can recommend to you right now is what I'm currently doing for myself, finding other food intolerances with a rotation diet. There are a couple really great books out there that can help with this process like the one I'm currently reading "The Ultimate Food Allergy Cookbook and Survival Guide" by Nicolette M. Dumke. If you have a local library try to pick it up, it gives great recipes, facts, and advice on how to overcome hidden food allergies and intolerances. Gluten might not be your only problem as it most certainly isn't the only culprit in anyone who's just starting to heal.