Waitingindreams

41 minutes ago, Ennis_TX said:

Yeah issue here is Celiac disease,,,,is not considered a disability by our health system. Look at your other complications, even a misdiagnosis based on the symptoms caused by celiac can be used here, I have autism also myself, if I get glutened or am exposed to some forms of dairy,,,it really comes out. Brain fog makes them seem so much worse. I have a few other health issues like ADHD and a few misdiagnose issues like extreme Bi-polar  and schizophrenia on the record....these last two were due to exposure to gluten and a aspartame which make me flip s$#& and turn into Mr.Hyde and start punching walls and breaking stuff. I just sorta through them all on the sheets I filled out and filed on SSI with the old psych evals and got it, I then did side under the counter jobs and sold baked goods, almond butters, etc at the local farmers market and out of my home off the books.

SO if you have no qualms tricking the system get evaluated while glutened and exposed to what ever foods cause your worse symptoms. Work with your doctor if you can, many do not care as long as they get paid sadly. See what you CAN get on record that qualifies you for SSI or disability. NOTE SSI max pay is $735 a month, and you CAN NOT have any other recorded income over $20 or they take what ever you make off your next check. SO best to do little side jobs off the books to get a bit of pay as there is NO way to survive on that pay and live a gluten free diet....unless you only eat rice, eggs, cabbage, canned beans, and spinach.

 

I can not believe i just gave this advice

Thank you so much for your reply! I was just beginning to doubt myself...if I made a mistake by just accepting their decision (after my first appeal) or if i should have really tried to fight back on it. I felt like such an idiot...I thought it would be a sure thing that I'd get approved, I felt like crap ALL the time and i already had a diagnosis. It seems that the foods that really bother me the most (apart from gluten) are all foods that are high in histamine - soy being one of the worst offenders. I'm trying to find out how I can get an OFFICIAL diagnosis, be it histamine intolerance or a mast cell disorder, but it's been easier said than done finding an allergist and/or nutritionist that I can go to after work (my new job is really weird with letting us leave early, it's ridiculous) But I am working on it. 

If I truly only ate the foods that 100% didn't bother me, I'd have an extremely limited diet. Mostly just some vegetables and some fruits, eggs sparingly...I don't eat meat, beans and spinach are high in histamine, I have oral allergy syndrome so I can't eat most raw fruits or veggies...I'm a mess. I thought I would have things figured out by now. 

50 minutes ago, cyclinglady said:

Hi Waiting!  It has been a long time!  I am so sorry that you are ill.  I can not help you.  I have only been on short term disability when I had my daughter and that was a long time ago!   I hope someone with an HR background can provide some assistance.  

Hi cyclinglady! It has been a long time. I had myself convinced I was managing my celiac disease with the SCD. It - did help in certain ways, but I still had skin issues, chronic fatigue, etc. Trying to find a way to get my histamine issues OFFICIALLY diagnosed. It seems that if I can stay away from foods high in histamine (beans, tomatoes, strawberries) then my rosacea and seb.dermatitis both clear up, AND m energy levels much improve. But...that's a lot of food to give up. Thank you for the reply! Good to hear from you. 

(I wasn't sure what category was appropriate here)

I am trying to keep this brief.

Back last year, I was feeling really sick, despite sticking to the gluten free diet and never cheating. In fact, I was even doing the SCD diet and STILL I had plenty of health problems. I also was under a lot of stress - I had a HORRIBLE UTI that lasted for over a month (and caused me to pee out all of my nutrients, my legs would buckle when I walked)  my grandma died in April, my dog died in August, and then my uncle died in September. I worked full time at a very high stress job, and often had to skip breakfast and lunch most days to get through my work day. I had FMLA coverage as well as PTO, but I was draining through my time fast because I just never felt good. Even with skipping breakfast and lunch, it was hard for me to get through my work day. My job was very strict...I worked for a call center for a large company and they tracked our "adherence" and "compliance" to our schedules and monitored my time in the bathroom. I was often stuck sitting at my desk, on a call I couldn't get off, nearly jumping up and down because I had to run to the bathroom and I couldn't. The idea that I could possibly have an accident (again, despite skipping meals) was very real. I saw one of my doctors numerous times, and after talking with him and co-workers, I began to entertain the idea of short term disability JUST for a few months so I would have the time and money to start getting numerous tests done. I explained everything to my doctor and he agreed this was a good idea, and that he would write notes supporting my need of some time away from work. (I felt sick like this away from work as well, this was NOT just a work issue, and I did tell him this) The plan was I would be out from October and I would return in January, so it would be 90 days, unless I felt well enough to return before then. At this time, I had used all vacation and personal days because I felt sick. 

Flash forward, I was allowed to stay out of work for the 90 days for an FMLA type leave, but they denied my pay (officially) after I was already back at work in January. (This was after an appeal that I sent in explaining exactly what was going on - that I was adhering to the gluten free diet and even trying alternate diets, such as the SCD, dairy free, etc)  They said it was because my doctor said it seemed like it was mostly a stress situation due to my job, where I explained, AGAIN, to them that the job wasn't the CAUSE of my symptoms, that it was merely exacerbating them and I didn't have time to go see a doctor. (I worked 8.5 hours, but I also had an hour commute there and back) and no more PTO to go to the doctor. They said that they wanted me to go to a therapist because of the "chronic stress" diagnosis, but totally ignored the celiac disease. I also sent all of my medical records to them leading up to my time being off. I didn't want to be on permanent LTD, I just wanted to have a few months to try to get my health in order before my PTO was reinstated.

It  was to the point where I was barely eating, everything I ate seemed to make me sick. I am still dealing with that now. And, that job that I had ended up laying everyone off...they closed all of the call centers in my state, I'm not sure if that had anything to do with their decision or not...but they paid me for the first 10 days and then made me pay them back for it. Are there any rights at all for people with celiac disease if they are adhering to the gluten free diet and have an official diagnosis? AND have notes from a doctor agreeing they should have short term leave? Should I have tried to keep fighting? Just curious if I had any options at all.  Thanks in advance! 

History: Diagnosed with celiac disease and IBS: July 5, 2013. Have been gluten free ever since. Tried SCD for 2 years with some success. Seem to have either histamine intolerance or mast cell issues. 

I make sure everything I use is gluten free, and my skin has improved so much! I also have a wheat allergy, though. Face Naturals, 100% Pure, and Dr. Bronner's are all great gluten free, all natural, and cruelty free companies. Coconut oil is good for a moisturizer. And personally, I've found that my hair is much healthier with less products. No more fancy serums, sprays, etc. Good luck

I saw someone else already mentioned this - but I agree that the "halitosis" is most likely due to your hiatal hernia.

I was in the same boat as you - my boyfriend of a couple months started telling me that I had bad breath. At first, I shrugged it off and blamed it on the white garlic pizza I had been eating recently...but a couple of months later he admitted that it was still pretty bad. I was diagnosed with celiac disease in July of 2013 - this was going on between August - October of 2013. I started experimenting with different foods and asking him when my breath was bad (attractive, I know - but I really was bothered by this) I have NEVER had a cavity and my dental hygiene is perfect - how can I have bad breath? I brush my teeth, my tongue, drink lots of water - etc...it started to really scare me when I would literally brush my teeth and he would tell me my breath was still bad. I knew something was wrong.

In my experimenting, I found certain foods really exacerbated the bad breath: All cheese (particularly cheddar) salsa/sauce, hummus (anything with garlic or onion) and anything with lactose (M&Ms, etc) I blamed the bad breath on my lactose intolerance and stopped eating foods with lactose - until my bf still complained about bad breath with other foods like salsa. I was pretty much giving up. Then, I found out in May of 2014 that I had a hiatal hernia. I see a naturopath - and he is able to adjust it non-surgically. After he adjusted it - the bad breath went away. I could eat whatever I wanted (gluten free, of course!) and my boyfriend said my breath was fine. Unfortunately in my case, the hernia keeps sliding back into place and I don't want to keep having it adjusted every couple of months (in my case - could be because of increased tenderness...it is extremely painful to have it adjusted) so right now I am working on losing weight and trying to find ways to strengthen my abdominals. I found that drinking apple cider vinegar drinks (they have a brand blended with distilled water and honey) helps beat the bad breath. The bad breath is due to acid reflux caused by the hernia...and the apple cider vinegar temporarily raises stomach acid. I went down 2 more pant sizes since first having my hernia adjusted - but I want to wait a bit longer to have it adjusted again. My goal is to get down to a size 4 or 6 and stay there to manage it...I am currently a size 8. 

I was grateful when my boyfriend told me too - despite being extremely embarrassed by it. Even though i have now been with him for nearly 2 years, it is still embarrassing when he brings it up. But now that I know it's due to my hernia, I still eat my cheese! I just try to balance it out with the apple cider vinegar drinks. I am confident that if I can ever get rid of my hernia for good, bad breath will never again be a problem. Unfortunately, I do sometimes have issues with slight constipation, and apparently struggling with bowel movements can bring the hernia back. Fantastic. I also try to avoid heavy lifting as much as possible.

Good luck! 

Thanks everyone!

Haha, yeah I kept them because I was always hoping I'd go back down. I kept trying to work at it, but nothing was coming from it. 

I have always struggled with my weight, since I was about 8 years old. I was always active in sports or dance...I never ate THAT much, but nothing mattered.  Both of my parents are overweight and so are most of the people in my family. In 2009, I started going to the gym a lot and began to lose weight. I did not change my diet. By exercising alone, I got down to a size 8. Even after I stopped going to the gym, I was able to maintain this pant size, for awhile. 

Pretty much all at once the health issues snowballed on top of me. Skin issues (seb. dermatitis, rosacea) lactose intolerance, extreme fatigue, and about a 60 pound weight gain in a very short amount of time. I was too upset to buy jeans, so I don't know what size I actually went to, but it was at least a 14 if not a 16. We'll say this was late early 2011.

I got diagnosed with celiac disease in July of 2013. I bought my first pair of jeans in awhile - size 14.

After a month of going gluten free, I went down to a size 12.

And that was it. I completely plateaued at a size 12, even after going on a candida diet and avoiding processed gluten-free foods.

Flash forward to October of 2014 - when I started the Specific Carbohydrate Diet strictly. Within about a month, I was down to a size 10. 

Now...today...I decided to try on my old size 8 jeans (for the first time in YEARS) just to see how far I need to go. They fit. They fit PERFECTLY. No sucking in, no struggling to get them to button. They fit perfectly.

I am officially back down to the pant size I was before all of this started. I am so relieved...especially because I really need to keep my weight down due to my hiatal hernia. I have a lot of other things to continue to work on, but I am so happy. I can't even believe it, it doesn't seem real. I just had to share this victory with you all.  

As for my weight - no idea. I kept swearing I'd weigh myself when I got back down to a size 8, but...I really don't want to Lol.

The sink at my bf's house is metal, so I think I'll go with Stephanie's suggestion! I'll scrub it with the dish detergent soap first, then spray the baking soda/acv combo (ACV is all I have/use) I might even just reuse an old bottle of acv and make a spray out of that. Thanks everyone! 

Laura - he cleaned it pretty well with soap/water, but we did end up throwing it in the dishwasher as well. I didn't drink the milk regardless, but we did make muffins with the meal and they were fine. 

They aren't SUPER expensive, but they are pricey (I think it was $12.00 for one) we figured with the money we were spending on cheese cloths, we might as well just get  durable, reusable nut bag. (lol) We have 2 - one for coconut, the other is for almond. If the sink was really dirty or if it fell into a gluten filled bowl/plate then I'd really be freaking out.

I think my stress levels will go down significantly once I can actually get my blood levels re-checked, as I never have. My primary care doctor told me it was unnecessary, and I am now in training in my new job and I am not allowed any time off. I won't get out of training/transition until March :\ After that, I want to find a good gastro that specializes in celiac disease and go see him and keep up with my blood tests. 

stephanie - Thanks for your response! I think after this we'll get into the habit of actually washing the sink. Anyone know the best way to do it? Should we just use dish detergent soap? Comet? Something else? 

The milk is raw, but we are going to cook the meal (I'm going to make muffins with it)  I really don't think there were any germs in there to worry about, but I do worry regardless. I am not positive if the nut bag is dishwasher safe, but we'll throw it in if we can. 

notme! Yeah I didn't even think about that >_< LOL. Swear it's a real thing! 

I think the nut bags have to be washed by hand :\

Lol, there were no visible crumbs or anything. We keep the sink looking clean, I just meant that we never scrub it clean with soap or anything. To the naked eye the sink looks fine - there were no dishes in it, nothing that would set me off other than the embedded paranoia that "Oh, he eats gluten and rinses his gluten dishes in the sink, what if..." 

I appreciate you taking the time to answer! He hand washed it in hot water/soap, so we're both hoping that was enough. There wasn't anything else in the sink - no dishes, crumbs, or etc so fingers crossed! I don't drink the milk, but I do eat what we make with the meal. 

We literally purchased nut bags from a health food store, rather than using cheese cloths. Here is the one we use:

The sink always LOOKS clean, and we always "rinse" the sink with hot water, but I mean we never scrub it clean. We rarely leave dishes in it as we have a dish washer, and we also rarely cook meat (I make chicken sometimes, but never red meat/pork etc) I didn't mean to make it seem like the sink has crusty stuff all over it or anything, and I'm not I'm not really worried about germs, I'm just paranoid that there might be gluten lingering in there somewhere. I was thinking that we could wash the sink going forward as a precaution, just in case he does have something with gluten in it. 

As for dropping it - you squeeze the nutbag into a strainer to get out all of the milk and then use the remaining meal for cooking. He went to hang it to dry for a bit as he worked on the next batch, and it slipped off the hook into the sink. Just wondering what to do to be cautious of gluten, since he does eat gluten. 

Hi everyone! Happy New Year!  

Okay so...I have been on a very strict diet since October. I have been cooking a lot more, and since then my OCD issues with gluten/cross contamination have increased significantly, especially since my family/boyfriend still eat gluten.

My boyfriend is very careful about cross contamination, and even decreased how much he eats gluten, but he still eats it and I am still stressed about crumbs/etc.

We make our own almond and coconut milk using nutbags. Today we were making the almond milk, and he accidentally dropped the nutbag in the sink. I immediately got paranoid because he washes his gluten dishes in the sink, and we never really wash the sink. I am aware I might be overly cautious, but my stress/OCD levels are at a peak when I am cooking, and I have never had my blood levels checked to see if my antibodies have gone down (maybe if I saw evidence that I am getting better I'd calm down)

He washed the nutbag out with hot soap/water. Is that fine? Should we put it through the dishwasher? Boil it in water/soap? Should it just be fine as is? 

Thanks in advance!

Ooh boy! I am excited for this. Gotta prepare.

-runs in place, shakes out hands- OKAY! Here are my ideal situations:

- More SOY free gluten free meals available...both in restaurants and stores. A lot of people with celiac disease can't have soy either, and we are already limited by gluten. For example, a lot of gluten free pizzas seem to have soy (in the crust). I have found a few places that don't, but a lot of them do. There is a restaurant in one of the casinos near where I live that has GIG certified pizza that is also soy free! I was super excited. It was made from rice. In addition to soy, a lot of people with celiac disease have issues with dairy and corn, yet almost all gluten-free products are filled with dairy, soy, and corn.

- I would love to have a stuffed crust gluten free pizza. I've never seen that!

- I wish restaurants offered more gluten free options in general. Usually it's pizza and burgers without the bun. Fries are usually contaminated because they fry them in the same oil as breaded foods. I've yet to see a restaurant offer gluten-free mozzarella sticks or quesadillas. I have tried a calzone though (also soy free!), and it was amazing. 

- Different sizes for gluten-free pizzas. I would love to order a gluten-free party pizza and freeze it...it'd last me for ages. Even though I'd pay more, it'd be worth it. 

I'll add more as I think of them!

I can't really help you on the skin thing...I sometimes randomly have armpit odor (before applying deodorant) and sometimes I don't. It's like it just depends on whatever my body wants to do. I also use an all natural, aluminum free/antiperspirant free deodorant, so I could still be detoxing.

But as for the breath...here is what my story is. (I am not a vegetarian, but I only eat chicken and turkey occasionally - no red meat or pork and rarely, RARELY seafood) After dating my boyfriend for a couple of months, he told me that I have bad breath. Um. What? I go to the dentist every 6 months. Never had a cavity. I brush my teeth every day, twice a day. Never once had anyone else tell me that i have bad breath, and I figured if I had bad breath, I'd 'know' it, wouldn't I? I brushed it off and assumed it was due to eating garlic or onions occasionally. Nope. So then I went crazy trying to pinpoint what foods could be causing my bad breath. I found out that whenever I ate large amounts of dairy without taking my lactaid pills (I am lactose intolerant) that my breath seemed to be bad (I would 'test' it with him) my breath would be bad even if i went into the bathroom and brushed my teeth right before. So I gave up dairy and hoped that would be the end of it...as it was extremely embarrassing, especially with my diligent dental hygiene. But no...it would still be on/off bad. Really bad at times. Salsa and salad dressing also triggered it. I finally went to the doctor and he told me I had acid reflux/GERD. He gave me samples of Pepcid to try. That made it worse. I was really getting frustrated.

Finally, I went to a naturopath and he discovered that I have a hiatal hernia. He adjusted it for me...and then all symptoms of bad breath were gone. I even was able to eat a rather large amount of dairy without the bad breath returning...but unfortunately the hernia slid back. I don't want to keep getting this adjusted (and I don't want to have the surgery) so I am trying to lose a good amount of weight and then have it readjusted. I also realized I have low stomach acid (which causes GERD - not high stomach acid) so eating apple cider vinegar temporarily raises my stomach acid and prevents/stops bad breath. For example, I can eat a marinara sauce with garlic in it if I have a salad along with it using homemade apple cider vinegar dressing. No bad breath. If i eat too much fat, it also triggers bad breath (like if I eat a lot of almond butter) so I try to either lower the amount of almond butter I eat, or eat it around when I eat apple cider vinegar. 

I really want to find permanent solutions to get rid of the hiatal hernia. I know weight loss/management is a good start. I gained about 60 pounds in a 2 month period when all of my health issues hit me. I was severely bloated (and still have bloating issues periodically, but less frequently and not as bad) at my smallest (before everything escalated) I was a size 8 - I am now a size 10. (getting close! ) I feel a size 4 or 6 might be my best bet to keep a smaller weight and prevent my hernia from coming back. It is extremely frustrating. I really don't want the surgery, since the hernia can still come back after the surgery and obviously other complications can arise...I'd rather just do it naturally and have him adjust it for me again. So on his end - it could be low stomach acid and/or a hiatal hernia. I never would have guessed that was causing my issues.

I hope you can figure out what is causing his bad breath issues! It is extremely embarrassing and disheartening to deal with it. I was mortified. I still am - I have enough to deal with as it is!

Update: Just found out today that my mother does not have celiac disease. I am not at all surprised, and I am very relieved for multiple reasons. Phew. Thank you all for the advice/for listening.

^ Right? Eeeeeewwww. Hahaha

Due to my strict diet, and all of my limitations - I pretty much cook everything from scratch...so when I can save time and buy something that's easy to make (pretty much never - just frozen fruit/veggies), I grab it. I bought the Stop & Shop brand frozen broccoli/cauliflower blend that you steam right in the microwave. So needless to say I didn't wash it or inspect it, I just threw it right in. I've never had an issue before! 

Thanks for the tips though, since I apparently might need to start buying fresh broccoli if I want it. -sigh- I can't eat it raw, so I will need to learn how to cook it. I like it best when I steam it in the microwave first, then my bf grills it. I like it really mushy and soggy, and kind of burnt >_>

Blessedmommy - Omg. Lol. That sounds disgusting. I know worms are natural, and that there could be worse things...but it totally skeeves me out. Food in general grosses me out more and more. I wish I could go on a water diet for like a year and heal completely. What would you suggest in general - SHOULD I be going to a farmer's market to buy fresh broccoli?

bartfull - Dare I ask, but are you saying there are always worms in broccoli? -gulps-

I just started a new job, and they had a nice luncheon spread out for us, complete with a sundae bar later on. I knew I wouldn't be able to eat anything, so I brought broccoli/cauliflower in a pyrex for my lunch. 

And I made this discovery:

EEEWWWWWWWWWWW!! I don't care that the worm is gluten free, I dunwantit!!!!  I got my money back after work, but man was I hungry all day :'( 

Thank you!! What a huge relief.

I can't have soy or lactose either, so I understand your pain. Advil doesn't seem to bother me, but it is so rare that I need to take it now. I hardly get headaches anymore (I think it's because of my strict diet) and when I do take it I try to just take 2 and not take it multiple times a day. Are you taking Advil frequently?

Hi! 

I don't know much about the FODMAPs diet in general, so I am not quite sure about what you can/cannot eat. I am on the Specific Carbohydrate Diet, and I've found a lot of foods bothered me by doing elimination diets before starting. Soy, yeast, and gums (guar gum, etc) seemed to cause major bloating, gas, etc. Also artificial sweeteners (xylitol, sorbitol) and additives like carrageenan. It might not be gluten, it could be another food intolerance. Are there chances of cross contamination? I once got glutened with symptoms lasting for 3+ days because my boyfriend kissed me after eating a burger. The smallest things can cause reactions. Are you checking your chapstick/lip balm? Hand sanitizer, etc? I used to love the scented varieties from Bath & Body works, until I found out they had wheat in them. My hands are in much better shape now (I have a wheat allergy too - It's not that gluten can be absorbed through your skin - but if you rub it on your hands and then touch food...) 

A lot of processed gluten free food has the previously mentioned additives in it, could it be one (or more) of those? I'm not sure what pain in your cecum area could relate to specifically...perhaps something to do with your bowel movements (constipation, etc) It's going to sound so gross but I pay close attention to what my BMs look like and how often I go. Your poop can tell you a lot! I won't go into detail...lol. 

I hope you find your answers soon! 

I'm a firm believer in coconut oil for...pretty much everything. Can you tolerate coconut?

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^ Check out #42. Coconut oil has antifungal and antibacterial properties, and you get so many uses out of it. It costs about $10.00 a jar, but you can find it anywhere (Stop & Shop, etc) and there are so many uses for it. You can use it as a moisturizer, hand lotion, etc etc. No need to worry about gluten, soy, or any other allergens. One jar will last for a LONG time. I swear it's helped me with acne too.

^ Yes! I LOVE Sunbutter, but I had to give it up for two reasons... 1, it is high in histamine and I'm still trying to watch histamine levels, and 2 it is illegal on the SCD diet (no seed butters allowed) But once I can have cheat days, I'm grabbing a jar! Have you ever tried Sun Cups? They're just like Reeses Peanut Butter Cups, only they're made with sun butter instead. They're my favorite candy...and they're gluten free, nut free, and soy free. They said they're coming out with a lactose free version soon too! I can't wait for those cheat days...

Thank you so much! (hugs)

Oh wow. That is horrible. I'm so sorry you had to deal with that, and I thank you for sharing your experience with me. I appreciate it. I don't want to pry and ask any further questions, but I do hope that he has respected your wishes and that you are feeling much better from being distanced from him.

I would say it's tough because I am still living at home at my age - which it is...but my sister is 24 and still living at home and she does not get the same treatment. Also, this treatment started (as far as I can remember) when I was 17. It is possible that she has bi polar disorder, or that she's just miserable. I'm not sure, but deep down I would love to go to therapy with the three of them. My sister isn't that bad, but she is very similar to my mother. My dad just doesn't want to deal with anything, so he doesn't get involved... and when he does, he screams at ME because it's easier to take her side than mine. (Though he has, rarely, stuck up for me. He knows she is awful sometimes)

I think getting out of the house is a huge first step. I'll feel a lot better, and I'm sure she is much easier to handle in smaller doses. She is seriously psychotic...like she says all of this nasty stuff to me, treats me like crap about all of my health issues, but she'll text me to warn me about bad weather and, sometimes, stay up until I get home from my boyfriend's house because she worries. So I guess deep down she cares about me, but not enough to believe me, take me seriously, or respect me? It's not a competition. If she has celiac disease too I just know she's going to make it a competition. This is hard enough to deal with.