• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Having Some Problems
0

7 posts in this topic

I self-diagnosed myself with Celiac. I saw several doctors in the past, was tested for Celiac and was negative, never received an endoscopy. I was diagnosed with anxiety/depression when I was 10, then IBS-D when I was 20, and finally PCOS at 21 (I'm now 22), although I realize I've experienced symptoms of all of these since I was at least 13. The IBS probably started when I was much younger. After doing my own research, I took it upon myself to begin an elimination diet.

 

When I was at my worst, I lost about 25-30 pounds from lack of appetite that was caused by the IBS symptoms. People have always told me I was thin, although at my heaviest, I was 135 lbs (I'm 5'5"), which is supposedly average weight. I appeared thin because I carried all my weight in my abdomen and wore baggy shirts to hide it. At my lowest weight, I was around 105, and now I'm 113. Now I'd love to gain the weight back that I lost, especially since it seems to be redistributing to my arms, legs, and hips, but I'm having trouble because of how limiting my diet has become.

 

I've been a vegetarian for about 8 years now. I've tried eating meat again, but it makes me feel bad, both physically and emotionally. Before I realized I was gluten intolerant, I knew I was lactose intolerant, but often ignored it. When I decided to go gluten-free, I realized I had to eliminate all dairy as well because I became even more sensitive.

 

I was doing well with my gluten-free vegan diet for about a month until I started to notice my symptoms resurfacing--the IBS came back and my period came about three weeks late, meaning the PCOS symptoms had returned. I assumed it was associated with rice, quinoa, and other grains since I was eating a lot of those, so I decided to eliminate all grains. I had reached 117 lbs, but as soon as I eliminated grains, my weight dropped to 113 and has stayed there for the past 2-3 weeks. At the same time, I eliminated legumes for about three weeks, and was basically living off of fruits, vegetables, nuts and seeds. I basically became raw vegan. I felt great for a while, but started getting anxious that I wasn't consuming enough calories. It was also causing my anxiety disorder to resurface in some ways, although it's possible that the anxiety was caused from having the flu about two weeks ago.

 

Last week, I tried to reintroduce legumes (beans only; no soy or peanuts). The first time I ate them, I had some gas and bloating, but nothing else. I figured it was fine since the irritation stopped after that and I didn't experience any diarrhea, so I've continued eating them this past week. However, I noticed that I now have dark circles under my eyes, I get tired more easily, and I get a small headache around the same time every day. I assume this means I'm sensitive to legumes as well, so I've come here to ask--how can I consume enough calories to gain weight on such a restrictive diet? I'm basically back to where I started three weeks ago--raw vegan, only this time it's not intentional. I'm not against eating cooked vegetables, but I'm a full-time student and also work 20 hours a week, so eating raw is basically a time saver for me. Cooking the vegetables wouldn't necessarily increase the caloric value anyway. I have a green smoothie every day for breakfast, a ton of nuts and seeds throughout the day, at least one avocado a day, lots of green leafy vegetables. I don't know what else to do, so any suggestions are welcome. Is it possible that I'll recover from some of my allergies? If so, how long would this take?

Edited by EricaM15
0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


First off, i believe your intolerances may go away.

 

I dropped about 40lbs in a little over a month when i was at my worst.

 

At my lowest of the low after starting the gluten-free diet, i was eating peanut butter and apples (or lettice), boiled chicken, rice, sweet potatos, cheese, and some steamed veggies.

 

This is not healthy. If i tried pretty much anything else my GERD would decide to act up.  I was quite sick during this time.

 

Eventually, i had to stop taking the medications for it before it settled down to a more reasonable pace (i have more days of no GERD than i do of GERD, drastic improvement).

 

The only thing out of that lot i listed that i can't tolerate at the moment is the sweet potato.

 

You probably know this already but you cannot keep that pace up, especially feeling like crud. I a a full time college student (21 credits) and i know how i feel if i catch a little cold nowadays. I cannot imagine going back to that state of belly issues.

 

What are you doing for protien? Are you getting enough? What about all the other vitamin levels?

 

Such a raw diet can be very harsh on an overacting system. It is also very possible that you have a leaky gut.

0

Share this post


Link to post
Share on other sites

What are you doing for protien? Are you getting enough? What about all the other vitamin levels?

 

Such a raw diet can be very harsh on an overacting system. It is also very possible that you have a leaky gut.

 

I have a lot of nuts and seeds for protein. I'm sure I'm getting enough protein. As for vitamin levels, I take a daily multivitamin along with a B-complex vitamin and a high dose of Biotin, which was recommended by my endocrinologist to help with the PCOS symptoms.

 

I actually find that my stomach feels best after eating a large salad of green leafy vegetables. I'm sure I have leaky gut, but I don't think raw is the issue. I'm simply struggling with the lack of variety and too few calories. Everything (aside from my weight) seems pretty stable when I limit myself to a diet of fruits, vegetables, nuts and seeds.

0

Share this post


Link to post
Share on other sites

Most of the beans that I have come across are processed on lines that also process wheat.  That can be the case with other foods too.  Have you considered gluten cross contamination as a source of your problems rather than food intolerances?  Keeping a food/symptom journal is very helpful in either case.  It can take a week to notice a reaction to a new food so you need to try to limit changes in your diet.  To consider cc issues, you need to keep track of sources of food and not just the food itself.  You can carefully source your foods by looking at labels for the "processed in a facility that also processes..." statement.  That statement is voluntary, so if you don't see it, that doesn't mean that the items are not "processed in a facility..."  At that point you can search here to see what people say, search the companies website, or make phone calls.

 

I hope you feel better soon.  It took me awhile at first to heal and figure out my diet.

0

Share this post


Link to post
Share on other sites

If it's lactose intolerance that's removed your dairy, maybe try goat milk products? I'd give yourself

a few weeks on your 'safe' diet and then see if you can tolerate a little goat cheese. Also, any

reason to be avoiding eggs?

0

Share this post


Link to post
Share on other sites
Ads by Google:


Most of the beans that I have come across are processed on lines that also process wheat.  That can be the case with other foods too.  Have you considered gluten cross contamination as a source of your problems rather than food intolerances?  Keeping a food/symptom journal is very helpful in either case.  It can take a week to notice a reaction to a new food so you need to try to limit changes in your diet.  To consider cc issues, you need to keep track of sources of food and not just the food itself.  You can carefully source your foods by looking at labels for the "processed in a facility that also processes..." statement.  That statement is voluntary, so if you don't see it, that doesn't mean that the items are not "processed in a facility..."  At that point you can search here to see what people say, search the companies website, or make phone calls.

 

I hope you feel better soon.  It took me awhile at first to heal and figure out my diet.

I've never really given cross contamination much consideration. I generally just assume any reaction is the result of an intolerance because of how strongly I experience the reactions. At this point, I think I need to give my body a rest again for a while before I try reintroducing foods again. I'll definitely keep cross-contamination in mind next time. I don't keep a food journal, but I'm very good at keeping track of the things I've eaten with just my memory. I just have an unusually good memory. It's also easy for me to remember what I've eaten throughout each day now that my diet has become so limited.

 

 

If it's lactose intolerance that's removed your dairy, maybe try goat milk products? I'd give yourself

a few weeks on your 'safe' diet and then see if you can tolerate a little goat cheese. Also, any

reason to be avoiding eggs?

 

I've tried lactose-free dairy products, and it seems to cause me the same problems as products with lactose, except I get a delayed reaction instead of one that's immediate. I don't eat eggs because they have bothered my stomach for as long as I can remember. I used to eat them occasionally when I was younger, even during the time I was only a vegetarian, and it never ended well. I've tried eggwhites as well and it's not any better. I'm not sure about fish, but I can't afford it either way.

0

Share this post


Link to post
Share on other sites

Given that you've tried lactose free products and still have issues, it's likely an intolerance of

the protein in cow's milk, called casein, that's affecting you. The advice to try a little goat's

milk still holds, although if you're worried about the cost of fish, then the cost of goat's milk

products will be fairly high for you as well. Perhaps a fairly inexpensive hemp protein powder

for the calories? You could throw a bit here and there into those smoothies.

 

Definitely start being more vigilant about cross-contamination. That's frequently the culprit

with people who feel better for a while and then feel worse again. You might also try getting

some coconut products into your diet, especially coconut oil. You could even make homemade

raw or cooked granola with your nuts and seeds. As with anything, give yourself a few weeks

on your safe diet before trying, and only try one new thing at a time.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,421
    • Total Posts
      930,467
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
  • Upcoming Events