New, In Pain, Alone, And Really Depressed
Posted 15 December 2010 - 10:37 PM
I'm in more pain than ever, overwhelmed, depressed, and scared... Any advice or prayers are sorely needed...
Posted 15 December 2010 - 11:14 PM
Amy in Alaska
Gluten Hit Girl
Posted 15 December 2010 - 11:26 PM
This feels a little silly but I don't know what else to do, besides cry some more. I'm 21, a senior in college, and was diagnosed with Celiacs about 2 months ago. I've been really diligent about my diet but none of my symptoms have gone away. Most have gotten worse and several new ones have shown up. I have a really supportive family, for which I am VERY thankful, but out of six I'm the only one with the disease and it can be really lonely. I've also been gaining a lot of weight, which I've struggled with my whole life. Right now I'm 5'2'' at 155. I am trying my hardest to have a good attitude about it but I just feel worse than before and I'm so tired of it.
I'm in more pain than ever, overwhelmed, depressed, and scared... Any advice or prayers are sorely needed...
Oh my! This is not silly at all. It is serious. Something isn't working and you are being diligent. I would cry too. I have only been gluten free 2 months and I was extremely and severely ill for 7 years, but I have had relief from the constant pain and the headaches. I do wonder if you have considered the secondary food intolerances some people get. Soy, Dairy, and Corn. I was rocking along all great with the diet and feeling better then suddenly found myself reacting to something. My face would swell and I would feel lousy. It turns out that I can't tolerate soy and it is in a lot of gluten free foods. Also vitamins and cooking oils. I had to do a second round of throwing out all sorts of canned goods due to the soy. Like tomato sauce, refried beans, salad dressings even my good old mayonnaise. Jeez soy is in everything. Other people here have had problems with dairy and have had to eliminate it for at least the first 6 months until they heal enough. Another common intolerance is nightshades-tomato, potato, peppers, eggplant are the main foods there. I find now that I have eliminated soy I only have joint pain if I eat potatoes. These multiple intolerances sometimes go away after several months or you may need to avoid them entirely. It is a process.
Be sure you are getting enough protein. I wasn't eating enough for a while and was feeling kinda lousy. Then I learned the hard way about cross -contamination. If you are in a house full of gluten eaters then it will be more difficult to stay gluten free. I mean, maybe you are reacting to cross contamination and you know a lot of people here talk about how their reactions get more severe on even tiny amounts of gluten.
I would think you should be feeling some relief by now and I hope you can figure out what it is. I hated being sick for so long. I'm sure you do too. Especially the pain. I'm glad you have a supportive family. If you have any questions feel free to ask. We will all help you. My last thought is throw away your toothbrush. I cleared the kitchen and meds and bathroom of all gluten containing items and somehow forgot to change toothbrushes...that set me back about a week. Just a few thoughts for you. I'd give you a hug if I could. It sucks to be sick.
Posted 16 December 2010 - 12:19 AM
The first thing to do is eliminate dairy because most celiacs are unable to digest it because of damage to the small intestine. Once you heal you will probably be able to add it back in. Without the enzyme to digest it, dairy just ferments in the gut and produces gas, bloating and diarrhea.
Step No.2 is to check all your over-the-counter and any prescription meds for gluten (and no, the FDA does not require that gluten be labelled on these so that makes it harder. ) You may have to call drug companies, ask the pharmacist, go online (glutenfreedrugs.com) to get this information.
Step No.3 is to discard any scratched nonstick or plastic cookware/containers, all wooden spoons, colanders and cutting boards - anything that cannot be cleansed of gluten.. Do not share spreads or peanut butter with any gluten eaters because their knives can leave crumbs in the jars - keep your own specially marked jars.
Step No.4 is to eat mostly a whole foods diet of single ingredient whole foods so that you know what's in your food. It means a lot more cooking, but you know that you are not getting gluten because everything that's in there you put in yourself (in your new or newly cleaned) pots and pans using your new wood and other utensils which you keep separate from everyone else's. Eliminate as much as you can the processed food especially the special gluten-free substitute foods that contain starches and grains your body is probably not used to digesting yet.
Make sure your kitchen work surfaces are clean (use paper plates if necessary) and do not share dish sponges or towels (assuming a group living situation). If you do not have to share with a gluten eater it makes it much easier.
Read every label for the hidden glutens,
If you have done this and are still feeling just as bad, then it is time to eliminate the soy for a good week and see if that helps (and soy is just as sneaky as gluten in the places it hides). A good number of us do not tolerate soy either.
If you want to test yourself for nightshades, try leaving out tomato or potato for a week, and then adding it back in and see what happens.
If none of this gives you any answers, then you may have to go to the full-blown elimination diet where you pare your diet to, say chicken, fish, rice, steamed veggies - eliminate down to where you don't feel bad any more, and then add foods (or food groups) back in one at a time every three or four days and see how you respond.
I hope these suggestions are of some help and that you are soon feeling better.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
Posted 16 December 2010 - 12:24 AM
Plus we are nearly to the shortest day of the year, where everybody tends to be light deprived in the Northern Hemisphere.
Once you get the diet figured out, you will feel better, but there is a learning curve.
Try taking a gluten free multivitamin, a B complex, and a calcium D magnesium mineral, because malnutrition can also cause feeling punked. Also, make yourself exercise, even if it is just for 10 or 15 minutes a day. Play some happy music. Go for a walk. Do something new you've been meaning to try. (and if you're wondering how you can do this with symptoms, I am stubborn enough that I will eat a safe gluten-free meal I make myself that I know will not bother me, then just not eat again until I get home, if there is something I really want to do. But I always carry my own water bottle and a safe snack when I go anywhere. ) You may want to check out the specific carbohydrate diet, or SCD, which is a high protein, high fat, no grain version, that you can eat for a while to get it under control and then branch back out into re introducing grains again. They use ground nut meals like almonds, which are easily digested, to make bread/cake/pancake products. They also call for a lot of yogurt, but you don't have to do that if you are totally dairy intolerant. Have you tried canned coconut milk ? I can make a bowl of gluten-free nut meal bread in the microwave in about 5 minutes - including grinding the almonds in the blender, but I've got a lot of practice.
People vary in sensitivity, also. I am not that sensitive to cross contamination, I suspect, compared to some people. I can eat out at restaurants that have a gluten free menu offering or will attempt to do one in good faith. Hint: never do this the day before a Major Holiday or Activity, just in case they screw up anyway. We ate out last year or the year before, (it blurs, but I can tell you exactly what the weather was....) on Christmas eve at well known chain restaurant with good reputation, off the gluten free menu, and I got as sick as a dog the next day, and then couldn't do anything but lie in bed. So there went our planned holiday day trip. This was an anomaly for that restaurant, why I'm not naming them, and for my reactions. We've since eaten at lots more restaurants, off the gluten free menu, and I've not ever had that problem like that. But at first my diet was very, very plain (to most people) and low carb.
Come New Year's, and my darling spouse proudly brings me some commercially made Gluten Free Chips, with a lot of seasoning baked in them, and I react again. Oh, goody ! I eat rice crackers and corn products all the time. This was a different brand.
I swear I'm going to just mash an avocado this year and eat it off the spoon. I'm gonna grow the lemon and pick it, too.
You may want to try an elimination diet and just eat plain fruit, vegetables, meat, eggs, nuts, and olive oil, and see what happens, if you feel better or not.
I have had some off reactions on food we have made at home, from manufactured ingredients, and have found that if I search here for a product review it will be likely revealed I'm not the only one. I stopped using boxed gluten-free milk substitutes in baking and now use just water or egg for the liquids, after ruining a big batch of baked goods, with something that was labeled gluten free, but wasn't completely. That was exasperating and expensive. My spouse, who is very vigilant, has also gotten me a few times accidentally when cooking- but at a restaurant, he's also caught the wait staff before they give me something they shouldn't, by asking, "and that's the gluten free version, right ?" We recently had to toss a new bottle of garlic powder which I was reacting to - name brand, but had "ingredients from China" on the label. Three times he had put the stuff in scrambled eggs and three times I felt puny afterwards. And people can hate it when you are really watching their every move in the kitchen, ready to pounce.... Imported msg can also now be contaminated... like I said, it's a learning curve.
Oh, and your relatives won't mean to, but they will get you. I've done restaurant cooking, I've done this gluten-free thing for years, I sort of understand "germ theory," we don't have gluten in the house, and yet, I don't know if I would attempt to feed somebody else gluten free. The average person, on the other hand, has no idea what the heck they are doing, nor how to read the labels, nor to use a dedicated pan without old residue. Or they don't think, and double dip the spoon or knife into the jar and then wipe it on a gluten item first... they may have baked before, and contaminated a lot of the other ingredients with wheat flour... where has that towel been... what was in the tupperware last... They really mean well. But, Oh, Good Grief.
Pets. Life is simpler if Kitty is not eating wheat, rye, or barley, either. Trust me. If Kitty sleeps with you, or hangs out on your desk, get the wheat, rye, and barley free cat food, because they lick themselves and then shed the dander and hair everywhere. I have the dogs on gluten free also, but I have 2 dogs who are massively allergic to it, so that must be somehow why they ended up here in the Karma of the Universe. You do not want to see how the dogs react to accidental wheating, which involves puking and peeing on the rugs. My one dog goes completely OCD. My cat was drinking out of the dog's water bowl and cross contaminating the dog.
Don't obsess over the weight thing. There is a lot more to life than being stick thin, like being healthy and happy.
Posted 16 December 2010 - 02:12 AM
I was feeling much wose after going gluten free, too. It's only been a year now, but here's what I've learned on the board and through my own experience that has helped me a lot. Much of this I wish I'd done right off - it would have helped!
1. Until you know how sensitive you are to gluten, it's easy to get too much, or get cross contaminated without realizing. One important thing to remember is that 'gluten free' products are not actually free from gluten. They have low amounts of gluten below a certain number of parts per million. If you eat enough of them (like gluten-free crackers, breads, etc...) you can easily get too much gluten on a day to day basis. How many ppm you can tolerate is something it may take some time to figure out. I have relatives who can have 20ppm or less (the average gluten-free product has this), one who can have 10ppm or less, and I need less than 5ppm of gluten or I'm still sick as a dog.
Also, many people become more sensitive to gluten after going gluten free. Whether it's reacting to lower amounts, or the reactions becoming noticeable, I don't think anyone knows, but it's not unusual to react to foods that seemed safe before, even for me at 1 year along the way. It stabilizes (I think), but it's something to keep in mind.
2. Celiacs can also have other sensitivities or allergies along with the disease that may not be noticeable. Dairy is a common one, as is soy. Soy and corn are also often contaminated with gluten and so can cause issues for some people for that reason as well.
3. As a result of the above two, it might be useful for you to really alter your diet for a few weeks and see if that helps. Then when you feel better, you can start to add stuff back in. But you're not stuck getting sick of all sorts of things around you, so you can't even tell what is making you ill, you know?
So, first thing is to keep a food diary. Record down what foods are eaten, when, and from what brand (as some can be contaminated while others might be safe). Record how you feel - emotionally and physically - at regular intervals during the day. This REALLY helps track down potentially problematic foods.
Next thing, if you want to tone it down, is to drop the processed foods. Drop the dairy. Drop the soy. Go to veggies, fruits, gluten-free whole grains, meats or beans, plain nuts (check these, as they are often processed with wheat).
If you start to feel better, you can start adding stuff back in and track it, see how you feel, yeah?
If you DON'T start to feel better, you can get even more careful of gluten (because the above list actually does have gluten, too, in really minute amounts. Sad, eh?)
This time, drop all gluten-free grains and flours (there is usually CC of these at some level. Pretty much always, due to farming practices). Drop all beans and nuts (also CC due to processing and farming). Drop all oils (because they're from grains and nuts). Change your salt to sea salt without any additives, because iodized salt has corn to stabilize the iodine (but get iodine drops if you do this and don't eat any fish. You'll need the iodine). Try to get fruit and veggies without coatings, and peel them or wash them, or both (mulch, fertilizer, waxes, sprays and so on can contain gluten and add minute amounts of gluten to produce)
Try this for a week or two, still keeping the food journal, and see if it helps.
4. Other things to consider: fructose malabsorption (not uncommon in celiacs, and involves some fruits, veggies, whole grains - a whole host of stuff). Other digestive issues. H. pylori infection (again, not uncommon in celiacs)
5. Weird places to get gluten - just in case you haven't looked at these yet. Dust at construction sites can contain gluten that you can inhale and then end up swallowing some of, like from drywall and plywood sawdust. Any lipstick or chapstick, of course, whether yours or from someone you kiss. Contaminated dishes or cutting boards or utensils (if it's wood or plastic, it can absorb gluten and release it back into foods. Scratched teflon can do the same thing). Shampoo, lotion, nail polish, if you get it in your mouth, chew on your nails, etc...
6. One last thing: if your family has not been tested for celiac disease, I would urge them to do it. out of people who are 1 degree separated from a celiac, 1 in 22 are also celiacs, often without any symptoms that would have them diagnosed. This is a good link to check out what symptoms can appear that can indicate celiac disease (among other things):
For my family, my father was diagnosed 8 years ago. No one else got tested. I was very ill, caught a nasty disease because of my lowered immune system due to celiac disease, and was finally diagnosed last year. Turns out I've likely had this for 21 years. Then, we tested everyone. My daughter - with no symptoms that were recognized - came back positive. So did my brother. My son was negative, but had symptoms resolve on the diet anyway.
So really...good idea, if they are willing to check it out (if they haven't already, of course).
And congratulations on having such a supportive family. That is worth it's weight in gold! Hope you are feeling better soon. When it hits...it's amazing.
Oh, re: the weight gain! While it can be the gluten, if it doesn't resolve when your other symptoms do, my best guess would be that it's due to your body having been in starvation mode before this. If you weren't getting enough nutrients, and calories, because of the disease, your body is all primed to conserve every calorie it gets. So it doesn't need as many.
That one...that's where I'm at. Once I stopped losing weight, it's been shooting up on an average caloric diet. When I lower my caloric intake or really up my exercise, I finally lose weight again. But I DO tend to gain weight, too, when I am still getting gluten, so that really can be an issue if you are getting trace amounts that are too much for you.
Good luck, hon!
Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease
23 years with undiagnosed sulfite sensitivity
25 years with undiagnosed mast cell activation disorder (MCAD)
Daughter: celiac and MCAD positive
Son: gluten intolerant
Father, brother: celiac positive
Posted 16 December 2010 - 03:24 AM
Also, keep coming back here to this board because everyone here can empathize with what you're going through, and they are a wealth of good advice and information.
Posted 16 December 2010 - 09:41 AM
Posted 16 December 2010 - 04:23 PM
Typical symptoms of cross contamination, including emotional blues.
Plus we are nearly to the shortest day of the year, where everybody tends to be light deprived in the Northern Hemisphere.
Pets. Life is simpler if Kitty is not eating wheat, rye, or barley, either. Trust me. If Kitty sleeps with you, or hangs out on your desk, get the wheat, rye, and barley free cat food, because they lick themselves and then shed the dander and hair everywhere.
I'm about 2 months in too and hit that same wall as you. I'm starting to finally come out of that depressed haze and seeing some light at the end of the tunnel.
I was feeling alone, sick, undernourished, and generally bitter since I was trying so hard. That, after a month-long "honeymoon" period that made me think I might soon be able to fly. Well, that went away and I was left with the reality of coping emotionally, all while feeling malnourished and damaged. I feel you that it's just a much harder, longer process than I ever expected. I'm in grad school and it's really tough to be social with friends and uphold all your responsibilities while dealing with this in the middle of the semester.
The key thing that helped empower me was that I found a really good nutritionist. I didn't realize how badly I was starving myself till she looked at my food list and said I need to up the protein majorly. What a lot of us end up doing, I'm learning, is we starve ourself (often by accident) of the calories we need, even though we think we are eating pretty well (fruits and veggies, etc). That can send your body into starvation mode, which makes the body cling to any fat you eat. I'd like to amend something said in a previous post that when your body is in starvation it "doesn't need as much". It's probably more accurate to say that your body will gain weight with less food, which makes it seem like you're eating too much. The key is to eat frequently and eat plenty of protein and good fats (avocadoes, nuts, olive oil etc). I was probably stalling the healing process because I wasn't giving myself the nutrition I had been lacking. You can't start re-absorbing nutrients till you heal the gut and put new nutrients in, which takes plenty of fuel!
Keep going, and try to open up to your friends for support. I thought my friends were uncomfortable with my diagnosis or something, until I really started having heart to heart talks and showing how much I was struggling (read: breaking into tears sometimes). You have to teach people how you need them to be there for you. Last night, my friend bought me gluten free hard cider when I came to her house, and it meant the world to me. Also, maybe look for a support group in your area. It's nice sometimes to be able to talk to someone who knows exactly the kind of things you're dealing with (plus they often have samples and other goodies!). Just remember, it will take time, but will get better the more you stick with it (I have to remind myself of that many times during the week).
Side note: What gluten-free dog food do you recommend, Takala? That's the one last thing in my house that has gluten and I have occasionally caught myself feeding the dog and then forgetting to wash my hands, or letting her lick my face. Silly! So far I've been lucky and haven't gotten sick, but I think it's bound to happen.
Visual damage seen via endoscopy Oct '10
Diagnosed Celiac with "3B" damage via positive biopsy Oct '10
Gluten Free since 10/9/10
Posted 16 December 2010 - 04:52 PM
They also make cat foods.
Posted 17 December 2010 - 05:34 AM
Really going down to single ingredient stuff *really* helps. I was still struggling until I cut out all processed food and made everything from scratch. It's difficult if you're by yourself, but you can cook up meals on the weekend and freeze for the week, and there's lots of lunchbox snacks you can pack if you don't have access to a fridge/microwave during the day.
Believe me, processed stuff that doesn't have gluten warnings, does not mean it's 100% gluten free. Most celiacs can get by with 99% gluten-free, but shared lines/factories/storage/transport means that sometimes food gets trace amounts of gluten, and not all companies are clear enough in their warnings about that.
As soon as you can get to a point where you're not sick all the time, you can start adding things back one at a time, and you should see a very clear reaction when there's something off about a product.
Lastly, please try cutting out soy and dairy for a while - soy makes me very sick, small amounts of dairy I'm fine with but I can't drink a glass of milk without feeling a bit bloated and ill
You can try an elimination diet - which isn't a fast/starvation diet, but is a small list of foods you know are safe, that you start with, and eat as much as you need to keep yourself fed. Then you start adding food groups one at a time every few days (Your reaction may take a few days to kick in). You should see a clear difference when you add something you're intolerant to.
Good luck, and hope you start feeling better soon!
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!
2012 - Soy no longer a problem
Posted 23 December 2010 - 08:30 PM
Also, I've tried switching out all my cosmetics and toiletries but it's proven overwhelming to say the least. I'm read conflicting reports but what shampoo do you all use? I'm at a loss. I got some Desert Essence organic shampoo but it made my scalp break out in painful hives :\ Figures huh? Any help?
Posted 29 December 2010 - 05:48 AM
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)
Posted 29 December 2010 - 10:21 AM
The best part is feeling well and not being sick.
Here's a few tips.
1. Eat clean at first. You have a lot of gut damage that needs to heal and your body can't do that unless you give it the best fuel possible. Lean meats, fresh fruits, fresh vegetables, plain rice. It's only for a short while and it will speed you on your way to health. You can pig out on gluten free cakes, gluten free donuts, gluten free mac and cheese, and gluten free pizza later when you are fully healed.
2. the tips of the villi are where you make lactase to digest dairy, so until that heals dairy may be out for a bit. I can eat it with no problem now after years of lactose intolerance.
3. Many also find they need to cut other things for awhile. I can't tolerate soy, except in small amounts like soy lecithin, but for awhile I had to cut dairy, soy, tapioca, xanthan gum and nightshades.
4. Use the search function on these forums and look at old threads. Look for withdrawals and newbies and things like that. Read read read read. You will learn FAR more on here from those of us who have been there done that than you will in any books you have to spend money on.
5. Find one pasta and one bread you like. My favorites are Tinkyada rice pasta and Gluten Free Pantry Basic White bread mix. That bread is also simple ingredients and I was able to tolerate it pretty early into the diet. It's super easy to make, not expensive and it tastes the most "normal" of any bread I've tried. You can actually make a regular sandwich out of it and it doesn't fall apart.
I also like Arrowhead Mills All Purpose baking mix for pancakes. I do one cup mix, one cup milk (or almond milk) and one egg. It already has the baking powder in it.
6. If your body acts weird don't freak out. You will have withdrawals and it will do strange things while you adjust. There was a period where every single thing I put in my mouth made me sick but it passed in about a week.
7. Start researching restaurants and find a few places ahead of time where you can eat out. Prepare now so that you aren't panicking when you are out somewhere and you need to eat.
8. Get used to taking food with you. Apples, bananas, nuts, oranges. Kettle Chips and Baked Kettle Chips are gluten free and travel great in the car. I love the baked ones a lot.
9. Honor your grieving process. At first you will feel deprived and you will go through many emotions. It passes and it's good to process it and come here to vent. We are here to listen if you need to rant.
10. Welcome to the best club you never wanted to join! It does get easier I promise!!!!
Had GI symptoms, allergy symptoms and unexplained illness my whole life.
Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!
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