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
Are you concerned because you've noticed changes in your cycle? Because that was one of the reasons that I went gluten-free to begin with. Ultimately the short answer to your question is...yes. There are many of us who have had problems with fertility with or without an official celiac diagnosis. I am self-diagnosed Celiac (my grandfather was diagnosed and I carry both a Celiac and non-celiac gluten sensitivity gene) but my blood tests were negative since I'd already started the gluten-free diet before I was tested and my doctor believes that I am NCGI. Personally, one of the reasons that I went gluten-free was to see if it would help regulate my period. Unfortunately, while my overall health improved drastically since I changed my diet. I still ended up being diagnosed with primary ovarian insufficiency (or POF-Premature Ovarian Failure as it's commonly called) at age 32.
Here's my story with regards to that. I started having trouble with irregularity when I was about 28 1/2 years old. My cycle shortened from 29 days like clockwork to every three weeks (in addition to suffering from hot flashes, terrible night sweats, loss of libido, urinary frequency and dryness). After having my blood tested a couple of times over the past three years (and coming back normal each time) I ended up getting abnormal results the last time around as I was preparing to begin trying to get pregnant. What truly indicated the POF for me was not the high FSH but the measurement of my Anti-mullerian hormones or AMH and the fact that I am not ovulating and probably haven't been for a while. Recent studies have shown AMH to be a better indicator of ovarian reserves than FSH. Normal women at my age (32) are around a 3 or 4. When tested my AMH was at 0.11 and then even lower when they re-did the test. When you get to 0 there are no egg follicles left. (When the Dr. ultrasounded my ovaries I had no follicles in my right ovary and only 3 in the left...also consistent with the diagnosis) AMH is a newer test that wasn't in use frequently three years ago...so my regular doctor wouldn't have known to use it. Currently, I am still having periods, but my FSH is above normal (though not yet fully menopausal) and both my estrogen and testosterone levels are low. I was told that my only hope of getting pregnant would be to use donor eggs and IVF since my odds were less than 2% if I was going to try to use the few remaining follicles that I have.
Fortunately, or unfortunately for me (depending on how you look at the situation) I am in a lesbian relationship which makes access to sperm extremly difficult, but access to a second uterus par for the course. In light of our situation, I have decided not to pursue IVF with egg donation at this time (Even though our HMO insurance in Illinois would have covered the vast majority of the costs! Amazing...simply amazing. Illinois is one of only 6 states to mandate infertility coverage including IVF in health insurance). If I had done the egg donation, my wife would have been my donor...but after reviewing the possible side effects of IVF we decided that we'd be better off if she carried the babies rather than me getting pregnant and risking triggering any additional auto-immune problems.
I'm sorry to throw my sob-story at you...but I needed to get it off my chest and perhaps find a way to encourage you to be your own best advocate. I was worried for years and kept hearing "you're young and healthy." from my doctors. Sure, I am young. And I'm much healthier than I've ever been...but that doesn't mean that I didn't know when something was off in my body. You are the best judge of your situation. If you have concerns, listen to your intuition and don't wait to start trying (if you can). If it is not a good time for you to be pregnant now, but you still think you want kids. Actively pursue a good relationship with your doctor and consider checking your AMH in addition to your FSH, Estradiol, and LH. The AMH levels will let you know whether or not you have a good amount of follicles in reserve. The higher your number, the "younger" your ovaries are and the more time you can wait. Blessings and good luck to you!
I am also Celiac with Curly Hair! I have used Kinky Curly products on my hair since I went gluten free a year and a half ago. I LOVE their products! You can get them at Whole foods or Target, or online at their website: Kinky Curly. The great thing is that they smell fantastic too! I usually shampoo and apply a small amount of the conditioner which I leave in. I follow with the curling custard and finger curl my hair before letting it air dry. I may also use some of the Aubrey Natural Misst hairspray to finish. Hope this helps!
Naturally Curly.com has a link to wheat/gluten free products here: Naturally Curly
BTW, if you have dry scalp along with your curly hair (which is common-you'll have an itchy scalp and may see white flakes) you can deep condition your scalp by massaging about 1 oz of coconut oil into your scalp/hair and leaving it on your head (I wrap my head with a towel) for about 30 minutes before shampooing. You can then follow up with an Apple-Cider vinegar rinse (2T apple-cider vinegar to one cup water) to clarify and and shine. It's worked wonders for me and helped calm the itchies that I can get as a result of dryness.
I have IgG reactions to Gluten, Dairy, Eggs and Soy. When I talked to my allergist (Dr. Newhall in Chicago) about the Egg allergy and the fact that I was having such a difficult time baking without them she told me that a large percentage of people with an Egg allergy can tolerate small amounts of egg when they are baked "in things" in an oven heated to at least 350 degrees F and for more than 20 minutes. The reasoning behind this is that the egg protein will break down when heated to a high enough temperature for a long enough period of time which will make it easier for my body to digest.
What this means for me is that I still can't cook pancakes with eggs (I use flax gel with the Namaste brand pancake mix, almond milk, and the Enjoy life mini-chocolate chips and it rocks! Plus it is potato starch free!)and cookies are pretty much a no-go too, since they only cook for about 9 minutes a pan. I can however eat brownies again (2 eggs with the King Arthur Flour brand gluten-free brownie mix) and have eaten a specially prepared cake made with eggs from Rose's Wheatfree Bakery in Evanston, IL. So, though scrambled eggs, mayonnaise, and french toast will always be out of the question, I have been able to reintroduce a few foods which has made my dietary restrictions just that much easier.
Have you thought about cooking meals before you leave home, packaging them into individual portions via freezer bags, freezing them, and then reheating while you're on your trip? I just got back from a 9 day camping trip where all I had was a camp stove (JetBoil) and a cooler with ice (I refilled the ice daily). I have never been so healthy during a camping trip as I was this time! Yes, it took some work...and I had to cook a whole lot before we left, but it didn't cost that much more than my regular food would have, and I was able to eat comfortable and safely the entire time.
The foods I cooked included:
Chicken Tagine (a Mediterranean dish that I added on top of "boil in bag" rice)
Burgers and pureed sweet potatoes
I also brought along several LARA bars (I like the coconut cream variety) as well as rice cakes, almond butter, one-cup portions of chicken broth, boil in bag rice and trail mix. If you're creative you can bring almost anything that you'd usually eat so long as you freeze it first.
I don't know if I can truly say that I have a specific lectin intolerance...but the foods that I have the greatest reaction to are all high in lectins. When I read the krispin report http://www.krispin.com/lectin.html he mentions the following: grains-especially wheat and wheat germ, but also quinoa, rice, buckwheat, oats, rys, barley, millet, and corn; legumes--all dried beans including soy and peanuts; dairy; and nightshade vegetables--including potato, tomato, eggplant, and peppers as being the most "toxic" lectin food groups.
My specific symptoms before going off of gluten, milk, eggs, soy, nightshades, legumes, and yeast were as follows: GERD, IBS, depression, night sweats, irregular periods (too frequent), leg and foot cramping, body pain, headaches, anxiety, diarrhea, gas, hypoglycemia, and low energy. Now, having been off of these foods for 10 months I can say that I have seen a resolution in the great majority of these symptoms. I have been able to get off of 6 daily medications...my doctor says my depression and IBS are "in remission" (how nice) and I am no longer suffering from the night sweats, body pain, headaches, diarrhea, or gas. I have still had some issues with anxiety (it's hard to be on this damn diet!) and occasional heartburn but I can honestly say that I feel SO MUCH BETTER! In fact, I've had family, friends, and co-workers all comment on how good I look now, and this includes people who didn't know that I changed anything in my diet.
For me weight loss wasn't a problem (I've always been on the thin side) but I have been able to stabilize my weight and found that I am no longer quite as hungry all of time time. I also do better if I stay away from too much sugar as that will cause me to become light-headed and woozy if I don't balance it out with some protein.
Hope this helps. Hang in there! It's totally worth all the hard work!
Have you considered other food intolerances? I started an elimination diet in October of '09 after my multiple symptoms became overwhelming. In addition to numerous gut issues, one of my primary symptoms was horrific night sweats and also a very irregular period (too frequent in my case) I also had my thyroid, cholestrol, and FSH checked and when they all came back normal my doctor told me to "get a fan" and invest in cotton sheets. Needless to say, I was pissed. On my elimination diet (and after ELISA and stool testing) I realized that I was also intolerant to SOY, milk, eggs, and yeast. When I cut soy completely out of my diet (including lecithin and soy oil for me because I seem to be highly reactive) I experienced a near immediate relief from the night sweats. In fact, I can't even remember the last time I had one and my period is returning to a more regular spacing of 26 days instead of 21. I know that this might not be what you want to hear, but it seems to make sense to me especially considering how often companies tout soy-hormones as a benefit for peri and menopausal women. Could be that the hormones in the soy products are overloading your system and causing you to experience the night sweats. Just my two cents. Good Luck!
I am trying to find a doctor who is knowledgeable about Celiac disease and other food intolerances. I live in Chicago and I know that there are several around...but, here's the kicker, I need someone who accepts Blue Cross Blue Shield HMO Illinois insurance or I can't afford to see him/her.
I am open to ANY suggestions you might have because I have no idea how to find out this information otherwise.
I hear you with regards to the seasonal allergies here! I started the gluten-free diet about 5 months ago and have seen a resolution of so many problems, including the great majority of my allergy symptoms. On a hunch, I stopped taking my nasal spray two weeks ago and I am fine. This has never happened before...and it's Spring...and the pollen is driving my co-workers nuts. Hallelujia!
With regards to genetic testing. I screwed myself for a "true" Celiac diagnosis by starting my gluten-free diet about a month before I went in for my blood testing. My results were negative for any of the blood antibodies...but after my doctor called me up and told me "Congratulations! You don't have Celiac!" I knew something still didn't jive. I did a 24 hour gluten challenge while on winter break and became EXTREMELY ill and almost had to go into the hospital because I was so sick. Based on this one day trial (and the fact that my grandfather was a diagnosed Celiac) I decided to fork over the money and give the Entero lab stool tests a shot. I tested for gluten and dairy sensitivity plus the Celiac genes.
When I received my results I showed positive IgA for BOTH gluten and casein (these did not show up on the prior blood tests. Those only showed IgG Milk, Egg, and Soy sensitivities) in addition to having positive tissue transglutaminase results which showed an active autoimmune response to gluten. Based on that and my genetic results--one gluten sensitive gene from my mom, one Celiac gene from my dad--I have decided to call myself Celiac around people who don't know that gluten intolerance can be just as serious as Celiac. BTW, when I brought the results to my doctor she still told me I didn't have Celiac because my results weren't high enough (even thoughthe Entero lab tests came back positive 3 1/2 months into my gluten-free diet) and because the antibodies didn't show up in my blood.
Looking at my health today in comparison to the hell I've been through over the past 10 years I am completely delighted with the improvements. I have been able to get off of my nasal spray and my IBS medication ( I DON'T have IBS dammit!); I have cut my depression meds in half; I have cut my heartburn medication in half and I have seen improvements in: my mood, my monthly cycle, my sleep, my body pain, my appearance...pretty much every aspect of my life. Before this diet my wife had started joking around with me and telling me that I must be a hypochondriac because I was complaining of so many problems all the time. Now she comments on how much better I'm doing and quickly supports me around others who might question my diet because she can vouch for the HUGE improvements in my quality of life since embarking on this venture.
I am so glad that you are planning to continue the gluten-free diet. Be brave and stick up for yourself. You will feel healthier and rejuvinated in the long run!
www.mealsforyou.com has a great site. On it you can click on the food items that you either want to include or exclude and it will search its recipe database for recipes that fit your criteria. When I was starting this diet it was a great relief to find this free site. Good Luck and stick with it!
I really like using the Dr. Bronner's products-they clean well and smell great, plus they're biodegradable. If you're soy sensitive you should consider not using them...but the tocopherols are the last ingredient on their list of ingredients so it's totally your call.
Thanks for writing. All our products are gluten free. We use natural tocopherols (vitamin E), derived from soy and sunflower oils, as a preservative in our personal care products.
Yup, I'm a big, BIG fan of their products! The curling custard is AMAZING and I am continuously amazed by the fact that I only need to use three products (sometimes hairspray too if it's really windy, or humid) and I'm out the door. Before I found Kinky-Curly stuff I was using loads of different products with tons of chemicals in them and I was still having hair issues. So far I'm just waiting it out until I'm done with the bottles of shampoo and conditioner that I have. Since the customer service rep didn't mention the curling custard as including soy I'm thinking that, at the very least, I'll be able to keep that part of my routine and possibly switch to another herbal/organic alternative.
I'm only recently on the diet (this is day 125 for me) but I'm doing much, MUCH better. I figure that if I get everything else figured out and I continue to feel good then it's not a problem. If I stop using the products for a while and feel even better then I guess that will be my answer. Even though it sucks.
I reacted poorly to the Honey Nut Chex too!!! And this is even with the "Gluten Free" label on the front of the box. I'm glad I'm not the only one...although it sucks that we all had to feel glutened from this product!
I'm still a little nervous about the "soy-based cleaner" for the machinery, but I really like the product and I've been using it for about a week now and feel fine. My thinking is that at least the soy isn't specifically included as an ingredient, and that while I can't guarantee no CC, I'm still a lot better off using this than some other balm with nasty chemicals in them. I may keep looking for another gluten-free/SF balm that doesn't use a soy-based cleanser...I do really appreciate their honesty though!