Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

arened

Feeling Hopeless

Recommended Posts

I found out I have Celiac this past April. I go through a week or so where all of my symptoms go away and I feel happy and great. Then, CC happens and I feel horrible all over again. Maybe it isnt CC, maybe I am intolerant to a million other things. One of my symptoms is sever facial and finger swelling in the morning. Its been gradually going away. Today, I woke up and it was back full-blast. I literally feel hideous, defeated, and depressed. I am trying so hard to avoid CC and gluten, which is making me feel a little crazy and overwhelmed, and I just feel so discouraged today. How have you all managed to get through this huge adjustment and how long did it take before your symptoms went away? Being so swollen this morning just has me really down. Anyone have any stories of recovery from swelling? Thanks :-)

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


It is very gradual. I noticed recently that after three years of gluten-free life, I haven't had a bathroom issue in a long time. I go, I'm done, I don't think about it again. :lol: The ridges in my nails are almost completely gone. My face has a shape now. I don't look like a blob in pictures. Lots of small things that have become consistently better and better. I don't feel exhausted much anymore.

I did give up dairy and all the processed gluten-free goodies for about a year. I was very strict about the dairy and not so much with the goodies all the time. ;) I did have my gall bladder out in year two. I still have b12 shots and iron infusions. But I don't have any other food issues.

It's frustrating. We've all been there. I kept reminding myself I was sick for 10 years, so maybe allow half that at least to get better. Three years seems like a long time, but I'm glad I stuck it out.

Hang in there!

Share this post


Link to post
Share on other sites

I sympathize with you, too, because I keep going through the same thing. I am just coming down from feeling absolutely horrid for eight days.

Every other accidental glutening only lasted about 24 hours. Still trying to figure out where the cc came from, if it was cc or if it was something completely different. It could be from anything, anywhere. However, my symptoms were the same as when I get glutened, D, insomnia, anxiety, urinary pain and frequency, pain through neck and upper back,and other symptoms that seem to come and go.

I was using antifungals and thought they may have upset me. However, doing research on them, I really don't think that was the issue. Of course, they could have added to my cc issues.

As far as other food intolerances go, that is another hard thing to figure out. I did an elimination diet and had some success. Adding new foods every few days worked out well. I felt quite a bit better. However for me it may not be the food in itself but the quantity of a particular food that I eat. So I am back to square one trying to figure out what besides gluten is my issue.

Unfortunately, it doesn't work to live in a gluten free bubble. We can only hope that is what heaven is like.

I don't know how anyone gluten intolerant could intentionally ingest gluten. It is way too painful just getting cc.

Keep with the forum. There is so much support here. We need each other because only those with our issues can really understand it.

Share this post


Link to post
Share on other sites

Hi Arened,

Just a thought, but the night before or the every once in a while when this happens. Had you eaten any kind of potatoes, tomatoes, bell peppers or eggplant? These are called the nightshade vegetables. For some people they have a toxicity for them which will cause swelling, joint pain and make you feel just down right miserable.

Hope you get to feeling better.

Vicky


Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free

Share this post


Link to post
Share on other sites

Vicky,

I eat those foods all of the time! Its amazing, I went to see a million doctors about swelling, joint pain, GI upset, insomnia, and anxiety (and I am only in my 20's!) and I was literally put on a med for each but given no suggestions about how to deal with the underlying issues. I feel like people on this forum are more knowledgeable than the doctors I saw! I will definitely try given up nightshade plants. Thank you for the tip.

And thank you all for your encouragement. I am still in college and my friends don't have any health issues and just don't understand how difficult this diet can be. They frequently say, "A bite won't kill you." Its nice to head stories from people going through the same thing!

I have one question for you. My entire family and extended family are all traveling for one week to Omaha, NE to surprise my grandma for Thanksgiving. I am so excited to see everyone, but dreading all the meals. My grandma LOVES to cook, I can't expect her to buy new pots and pans, etc etc etc. I keep thinking about the trip and getting a pit in my stomach. Any advice on being a guest in someone else's home? Thanks!

Share this post


Link to post
Share on other sites

Vicky,

I eat those foods all of the time! Its amazing, I went to see a million doctors about swelling, joint pain, GI upset, insomnia, and anxiety (and I am only in my 20's!) and I was literally put on a med for each but given no suggestions about how to deal with the underlying issues. I feel like people on this forum are more knowledgeable than the doctors I saw! I will definitely try given up nightshade plants. Thank you for the tip.

And thank you all for your encouragement. I am still in college and my friends don't have any health issues and just don't understand how difficult this diet can be. They frequently say, "A bite won't kill you." Its nice to head stories from people going through the same thing!

I have one question for you. My entire family and extended family are all traveling for one week to Omaha, NE to surprise my grandma for Thanksgiving. I am so excited to see everyone, but dreading all the meals. My grandma LOVES to cook, I can't expect her to buy new pots and pans, etc etc etc. I keep thinking about the trip and getting a pit in my stomach. Any advice on being a guest in someone else's home? Thanks!

Hi. When I went to visit my family, I too was feelng intimidated about how I was going to handle it. However, it went really well with managing to avoid CC; I brought my own cutting board and knives, my own little cooler and containers to take food with me wherever, and I just spread out newspaper on the counter to prep my food on, and made sure anything I used in the kitchen had just been through the dishwasher and had been sanitized. It's funny, I was expecting to get sick from CC but didn't!

Share this post


Link to post
Share on other sites

When I visit family I take my own skillet and a sauce pan. My own everything basically and foods in a cooler and i've gotten to the point that I tell my relatives if they don't like it than I won't come anymore.

Family reunions were difficult at first but when I quit letting them guilt trip me into "eating just one bite" I quit getting sick.

So, just be real careful and try to keep the area your prepping ur food clean and use napkins, paper towels, and sometimes I use foil.

It will be fine unless you have a relative or two, who wants to play tricks and try to make you sick on purpose because they don't believe you. Yep, I've got some and there are other people here on the forum that have been gotten like that.

So, I hope you have a good time and have fun.

Vicky


Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free

Share this post


Link to post
Share on other sites

When I go out to eat with friends, I usually eat first. I don't get asked to go out very often anymore. Go figure! I have eaten out a few times where I know there are gluten free options and haven't gotten sick. I haven't found a restaurant in our small town yet where I can eat.

A group of friends gets together once a month to play a game called Bunco. It is really an evening more about pigging out on junk food than getting together to socialize. Every host seems to out do the last one as far as making goodies. I haven't even tried safe foods at their home as I know how easily they get cc. Most likely I am going to drop out of this as it gets so frustrating watching them gorge themselves while I am there.

When we go to my son's for the weekend, I prepare all my food ahead of time and keep it in a cooler.

This past summer we spent a week in a condo. It was very clean. I put all the dishes through the dishwasher when we got there. Before I did that, I only found one pan that had something stuck to it. I wasn't going to chance it though so I went for clean with everything.

We flew to my daughter's and stayed 10 days so I couldn't prepare food to take with. I ate a lot of tuna and mayo while we were there. She only had one small stainless steel pan that would work for me to cook in so I used that with foil as a lid. Not all her dishes went through the dishwasher so I was a concerned about that. I only got sick one day and do not know if it came from her house or from the gelato we had downtown. I felt pretty lucky as it is easy to get glutened when spending time with young grandkids.

Share this post


Link to post
Share on other sites

Hey Arened,

I know how you feel with the ups and downs. I JUST got my celiac diagnosis after about 9 years of horrid pain. I mean PAIN, can't breathe or move or walk. My primary Dr. referred me to surgery because they just didn't know what to do for me anymore. After removing my gallbladder didn't resolve anything they did the sprue bloodwork as a last ditch before exploratory surgery. To my surgeon's surprise I tested positive for the anti-bodies.

I immediately started my gluten-free diet and after about a week I began to feel great. After about 2 weeks the pain was 80% gone. But now it's been 2 months and it seems like every other day I MUST be getting gluten somehow. This last time I can't imagine what it must have been. I've been eating eggs, imperial gluten-free butter, mission gluten-free corn tortillas, rice and plain ground beef for 3 days and I'm still so sick. I feel like I'm going nuts. My husband is military so he's gone a lot, and of course one of those "a lots" is right now when it would be so nice to have him back.

It's so frustrating. I don't even care that all I can eat are rice cakes I just want those first few weeks of bliss when the pain was finally finally gone. I know it must get easier, but I can't understand where I'm making the mistakes. I really think there should be college classes offered to every celiac just to learn all the mysterious names gluten hides behind.

Share this post


Link to post
Share on other sites

Hey Arened,

I know how you feel with the ups and downs. I JUST got my celiac diagnosis after about 9 years of horrid pain. I mean PAIN, can't breathe or move or walk. My primary Dr. referred me to surgery because they just didn't know what to do for me anymore. After removing my gallbladder didn't resolve anything they did the sprue bloodwork as a last ditch before exploratory surgery. To my surgeon's surprise I tested positive for the anti-bodies.

I immediately started my gluten-free diet and after about a week I began to feel great. After about 2 weeks the pain was 80% gone. But now it's been 2 months and it seems like every other day I MUST be getting gluten somehow. This last time I can't imagine what it must have been. I've been eating eggs, imperial gluten-free butter, mission gluten-free corn tortillas, rice and plain ground beef for 3 days and I'm still so sick. I feel like I'm going nuts. My husband is military so he's gone a lot, and of course one of those "a lots" is right now when it would be so nice to have him back.

It's so frustrating. I don't even care that all I can eat are rice cakes I just want those first few weeks of bliss when the pain was finally finally gone. I know it must get easier, but I can't understand where I'm making the mistakes. I really think there should be college classes offered to every celiac just to learn all the mysterious names gluten hides behind.

I know you don't want to hear this, LittleFrench, but for some of us corn is just as problematic as gluten. Try laying off the corn for a few days and see if that helps. Other food intolerances are common with celiac disease, at least initially. Often we can add some of the foods back in later when our gut is healed. :)


Neroli

"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

Share this post


Link to post
Share on other sites

It is not unusual to have an adjustment period after going gluten-free. It may help to take a pro-biotic once in a while. Also make sure your vitamin pills and medicines are gluten-free.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

Share this post


Link to post
Share on other sites

Hey Arened,

I know how you feel with the ups and downs. I JUST got my celiac diagnosis after about 9 years of horrid pain. I mean PAIN, can't breathe or move or walk. My primary Dr. referred me to surgery because they just didn't know what to do for me anymore. After removing my gallbladder didn't resolve anything they did the sprue bloodwork as a last ditch before exploratory surgery. To my surgeon's surprise I tested positive for the anti-bodies.

I immediately started my gluten-free diet and after about a week I began to feel great. After about 2 weeks the pain was 80% gone. But now it's been 2 months and it seems like every other day I MUST be getting gluten somehow. This last time I can't imagine what it must have been. I've been eating eggs, imperial gluten-free butter, mission gluten-free corn tortillas, rice and plain ground beef for 3 days and I'm still so sick. I feel like I'm going nuts. My husband is military so he's gone a lot, and of course one of those "a lots" is right now when it would be so nice to have him back.

It's so frustrating. I don't even care that all I can eat are rice cakes I just want those first few weeks of bliss when the pain was finally finally gone. I know it must get easier, but I can't understand where I'm making the mistakes. I really think there should be college classes offered to every celiac just to learn all the mysterious names gluten hides behind.

___________________

Ah, I see you are approaching the motivational phase.

We tend to, in the beginning, have other food intolerances that are secondary to the celiac/ gluten intolerance. These may or may not be permanent. You will have to change your diet around some more to find them. You will also have to take cross contamination seriously and look around for sources of it. After you do these things, you should start to actually heal up.

When I went on this diet, I did it at first as a modified Specific Carbohydrate Diet which was grain free. Eventually I was able to add back in some carbohydrates and grains as to today I think I am on the more liberal scale of what a person can eat gluten free, other than I don't like flax at all. I am not a super taster, and have no idea why most of the rest of you hate bean flour, (and therefore Bob's Red Mill gluten-free all purpose mix) but I believe you. I had to modify the SCD because the source I was using as a guide, written by some English woman, was insisting that people should eat a lot of yogurt and there was no way I was going to do that. American yogurts are like mine fields, every time you find a brand that works, that is gluten free and has no added starches nor added lactose in the form of dry milk powder that didn't get converted, the company will change the manufacturing process. Sometimes I will eat yogurt now, but very cautiously. This version also insisted on using tomato JUICE instead of regular tomato products, and that was okay until Campbell's really started messing up and using mystery thickeners in their stuff, along with the V8 brand, I had to stop using it after definitely reacting to some of it years ago. I weeded out the eccentricities and contradictions, and used almonds ground up as a flour substitute, ate that, fruits, vegetables, eggs, nuts, olive oil, and meat and fish, and that worked.

When we had a bad power outage a few years back which lasted nearly a week, I started working to see if I could convert myself to getting by on more conventional foods if I had to. I do better on the unprocessed, whole foods, but I started adding in a rice cake or a plain rice cracker serving now and then, and then tried peanut butter. (peanut butter is tricky as the cheaper regular brands are full of fillers, and even the good brands can be cross contaminated, I was using a supposed gluten free brand and had to switch to one which does list what other things are in the plant, because that brand does not have a good reputation). I also found 2 brands of turkey lunch meat I can eat in a pinch, one is Hormel Naturals, the other is Buddig, both marked Gluten Free. Then I tried cheese, but I have to try to stick with organic cheeses. I also experimented with various gluten free flours, and I will bump the almond meal with the higher protein kinds like amaranth for a quick bread. But I don't miss white type breads in the least bit.

Some things that did not work out for me: Dream brand gluten free beverages, such as the soy and rice, ended up having trace amounts of barley from their rice syrup and fermenting process. I also ate a lot of soy at first, and that depresses thyroid function, so now I am soy - light. Other than Best Foods makes a gluten free mayonnaise, and San-J a wheat free Tamari soy sauce. I wish they would make a gluten free mayonnaise that was also soy free and did not have modified food starch. Sometimes I react to starches that are used as fillers, even if they are supposedly safe, so I am also much more into plain foods and scratch cooking.

I've tried the Chex gluten free cereals, they taste good, but me eating a cereal with nut milk or yogurt in the mornings just makes me tired because I am so carbohydrate intolerant, so I reserve that for special occasions. They are really good for family members who are also eating gluten free in the house.

Mission tortillas used to be marked gluten free. My first instinct is to tell you to try ditching them and see what happens, as they would be the most obvious culprit for cross contamination. You can mail order gluten free corn flours to make tortillas. You can also try gluten free polenta as a substitute.

You may be having a soy problem (that would be the Imperial butter spread). I just use olive oil for almost everything, coconut oil sometimes for baking, and can now tolerate small amounts of real butter IF it's organic.

Your diet is also really sort of lacking in fruits and vegetables. Even if it is the last thing in the world you want to do, try to eat more of them. Fruits, vegetables, nuts, and good fats like from avocados and dark chocolate are both full of fiber, filling, and are gluten free.

Fast snack department- Lara bars, raisins, peanut m&m's , gluten free peanuts, enjoy life chocolate chips, ghiradelli semi sweet chocolate (in the baking aisle) Hormel turkey pepperoni, instapizza with tomato and basil on any sort of gluten-free bread type item, hard boiled eggs, nuts, cheese (caution) rice cakes and peanut butter, homemade quick breads (search for "bun in a cup" microwave recipes here on this site), fresh fruit and vegetables cut up. Instant pumpkin pudding, put pumpkin, coconut milk and pecans and sweetener together, mix up and heat gently in microwave. Hot cocoa made with gluten-free nut milks and what ever sweetener and cocoa powder. Quick breads, started on stove top in cast iron skillet, finished under broiler, take about 5 to 10 minutes to make, and can be seasoned with things like rosemary and olive oil, pecorino romano grated cheese, and even made grainless with nut meals. Fast salads- pre shredded cole slaw, broccoli, tossed with oil and vinegar and nuts and raisins and some sweetener. Microwave baked potato with whatever safe topping you like.

The salad dressing problem. Put olive oil in glass cruet bottle. Put gluten-free apple or balsamic vinegar in another. Problem solved. Can add dabs of gluten free ketchup or mustard for flavor. In a restaurant, you can ask for an oil bottle set up and a wedge of lemon and do the same thing.

______

and now for the fun part, cross contamination issues:

ground coffee ran thru the grinder at the store with the flavored coffees. :angry:s whoops.

your colander being full of wheat spaghetti detritus. bye. get a new one.

your wooden cutting board being full of who knows what. ditto used tupperware for leftovers.

Paper towels are your friend to lay over things you are cutting on, like a regular plate or clean tile, until you get rid of this old stuff.

old teflon pans. wave bye- bye. old rubber spatulas and wooden spoons for them: wave bye bye to those, too.

old cast iron. - bake off the old finish in the oven cleaning cycle, scrub out, re season.

Ye Old Wooden Rolling Pin - the thrift store is ready for your donation. ditto some cake and bread loaf baking pans with that really sticky residue that won't come out.

The Toaster. get your own, dedicated to Gluten Free Only.

lipstick - is yours safe ? call or email manufacturer.

shampoo

hair conditioner. apple cider vinegar in water rinse works better anyway, finished with a dab of coconut oil or shea butter. see the Long Hair Forum for more hints on natural hair care products, they don't care if we have shorter hair now. Another side effect of gluten free is that your hair grows back in much thicker. :)

hair color. Garnier Nutrisse is okay, I don't know about the others.

hairspray - warning.

regular makeup - mineral makeups are available

moisturizer lotions- residue on hands, then handling food or ice cubes or something - ugh ! my spouse has gotten me doing this.

sun block- Banana Boat is supposed to be okay. Call to make sure.

pet foods - do you have an inside cat or dog ? That really is a major issue if they are eating gluten, and then licking you or themselves, sleeping in the bed covers, or drooling all over the place.

pet litter- yes, I have seen cat litter with grain products.

charcoal- be sure to use pure wood briquettes, as some brands use wheat paste filler

The Barbecue Grill . Eeeuw. Between the old burnt on sauce and the old charcoal and the grate, this is like Gluten Roulette. Wrap your stuff in foil until you get a fresh grate or a new one.

Hopefully this has given you some ideas on what could be changed or improved.

Share this post


Link to post
Share on other sites

I gots a trick! I gots a trick! :P It's a salad dressing trick. (and I hardly ever eat salads). Shake up your lemon juice or vinegar with some olive oil and Eyetalian spices and also either some psyillium husks or ground flax seed meal. The psyillium husks or flax seed meal will absorb moisture and make the dressing thicken and stay stable, instead of separating after a few minutes. This would probably work with okra husks juice too but I haven't tried it. Okra is a great natural thickener.

Boil an okra pod (cut up) in a cup of water (nuke it) and it will thicken like crazy.

Oh, and be sure to watch what you eat. :)


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

Share this post


Link to post
Share on other sites

I have the same problem with swelling that you describe. Even my temples used to protrude a bit. Now, after 3 months, everything is much better, but still not great. I have dark circles under my eyes where the swelling used to be. I know how frustrating and intimidating it can be to look in the mirror and be aghast at what you see... not a good way to start the morning. I think the answer lies in just being patient with ourselves and diligent about our diets.

So many great ideas here. So much to learn.

I found out I have Celiac this past April. I go through a week or so where all of my symptoms go away and I feel happy and great. Then, CC happens and I feel horrible all over again. Maybe it isnt CC, maybe I am intolerant to a million other things. One of my symptoms is sever facial and finger swelling in the morning. Its been gradually going away. Today, I woke up and it was back full-blast. I literally feel hideous, defeated, and depressed. I am trying so hard to avoid CC and gluten, which is making me feel a little crazy and overwhelmed, and I just feel so discouraged today. How have you all managed to get through this huge adjustment and how long did it take before your symptoms went away? Being so swollen this morning just has me really down. Anyone have any stories of recovery from swelling? Thanks :-)

Share this post


Link to post
Share on other sites