I Feel Like I'm In The Perfect Storm Of Illnesses

[tiredofbeingsickandtired]

I know this will probably be long so sorry. My dad was told he had problem with wheat but ate it anyway many times, no idea whether it was celiac or intolerance, he was born in 1925 and died when he was 80 ( I was born when he was almost 50). He had leukemia and several gut bleeds that he had to be hospitalized for towards the end of his life...I remember him getting sick frequently and suffered constantly from a rash when he lived with me.

Me, well I've always had stomach issues, bloating, serious dental problems no matter how hard I try to take care of my teeth, constant mouth sores, sometimes debilitating pain in my joints and feet. Feet, well at times they feel very HOT...also rashes, hives, etc. My scalp has always been horrible and at times I've lost alot of hair. Sinus issues and asthma flare ups that are severe. I am not underweight, but have gained 45 pounds, starving all the time, and was constantly bloated and retaining water. The past 2 years I've had issues with my kidneys, stones, etc.

Well DH became XDH, he is bipolar and off the radar most of the time for the past 4 years. I have 3 children, 2 of which have suffered as well with stomach issues and underweight, one of them has been tested 2 times for RA because she has been in alot of pain in her joints for almost all of her life, she is also fatigued easily. Each test was neg and the drs never gave me any other causes. Their doc is reluctant to discuss celiac because I have not been confirmed.

I moved out on my own and in an effort to save money I started eating sandwiches and cereal so they could have better food. I've been getting sicker and sicker over these past 3 months, nasty rashes, started having horrible pain, throwing up after meals and/or diarrhea (it was awful like the food had never digested) Severe pain in joints and unbelievable weakness, to the point where it was hard to grasp and hold anything. I started falling without any warning, feeling like my brain is still asleep while I'm awake. The past 3 weeks I've had the worst weakness and fatigue, worse than pregnancy, extremely scary. The fatigue has happened almost everytime I eat and its like I can't wake up. I've had my blood sugar tested and it was normal, diabetes was my first worry. I know that God alone has gotten me through every day and I'm so thankful for how blessed I am, I am not trying to complain, but just lay it all out.

I now have medicaid, XDH lost his job. Well medicaid is a nightmare. First doc said it was all because I gained weight and if I lost weight I would get better, then maybe it was IBS etc., no interest in any other reason for the decline. I switched Drs, the new doc wanted to test me for celiac, lymes (tested positive in 2006, then was told the second test was inconclusive. back then I got tested 7 days after I was bitten, bullseye rash, fever, severe fatigue, weakness -nothing like this though...I was told that if it was lymes like the first test said, it was caught very early and after about 3 months of antibiotics I was fine)

My appt was tues, there was a problem with what medicaid would approve since I had bloodwork done with another doc...was told I could possibly be retested at the end of the month.

After talking with my Dr. I decided to go gluten free on tues and not wait for the testing, I can not live like this another day if there is possibly something I can do that could help me get better. I've basically not worked all week and I have to work. I also have a sinus, ear, dental infection (appt is tues to see if I will lose yet another tooth that had a root canal and crown). I'm on clindamycin and started taking vitamins that are Gluten-Free. I just found out that sensodyne has gluten so that goes tonight. I'm so weak, I don't know if its the clindamycin but I can barely sit upright for an hour. Its taken me over an hour of getting up and down to post this. My kids have had horrible colds so at least we are all on the same page about lying in bed and watching movies/sleeping all day.

The good news is that I haven't had any joint pain for 2 days and alot of my bloating is gone, lost 6 pounds so far ...not from starving, I'm trying to eat as much as I can so I won't get weaker. I also have not have any diarrhea or vomiting, but some sharp pain (clindamycin maybe?)I'm praying that after a little while this fatigue & weakness monster will go away. I'm a very active person when I'm not sick and my kids really need me to be well since I'm all they have ..though I'm blessed to have an amazing church family that puts alot of time into each of my kids. I have not really told people until recently how sick I've been. I'm sorry to go into so much detail, talking with family is pretty much getting me odd "what's gluten, thats crazy that wheat can make you sick and hurt?" looks..

..well they think I'm a few gluten free fruitloops short of a full bowl.

[nasalady]

Welcome!

Your story sounds very familiar to many of us, I'm sure.....it certainly does to me!

You've decided that you can't continue eating gluten until you're tested, which sounds like the right decision for you. Hopefully you will start to feel much better within a few more days. The fatigue and weakness should improve, unless caused by something other than gluten. You say you have a bad infection and you're on an antibiotic...this might be part of the problem.

Also, you should be aware that some of us have related disorders that cause pain, fatigue, weakness, etc., etc., such as rheumatoid arthritis and fibromyalgia. These conditions can go into remission on a gluten free diet but it may take a while (some have reported not being 100% better until two years after going gluten free).

I hope you are on the road to a full and complete recovery. Just hang in there!

Take care,

JoAnn

[tiredofbeingsickandtired]

Thank you, I've been trying to prepare myself that this could be a long haul, but I think financially its a little scarier now. I know God is the ultimate Provider, but I've always been the kind to work my tush off and there is no way I could do that this week. Also without a "diagnosis" its a bit harder to explain to people whats going on with me. I've been told I need to get depression meds because I look like that "depression hurts" lady on TV, people have asked me how I could be intolerant to gluten "all of a sudden"?... when looking back I can see that its not sudden at all. I've been tested several times for thyroid, and the new dr also mentioned fibro and RA if this does not improve. I guess the drastic improvement in pain, bloating, and stomach issues has led me to believe I'm on the right gluten free track. But if I continue to improve I dont think there is any way I will go back on gluten just to get tested.

A verse I came across today really hit me- 2 Chronicles 20:15 Thus says the LORD to you:

[tiredofbeingsickandtired]

I'm so happy to tell you that after eliminating a couple of hidden gluten sources/cc issues I'm finally feeling so much better! I worked this morning (dogwalker) for the first time in a week, without any pain or severe fatigue afterwards. I'm still not a 100% strength wise but its an amazing difference. I also can't believe how much better I'm breathing. I would LOVE to get off the asthma steroids completely and I'm now down to the lowest dose, actually missed it yesterday by accident and didn't even notice it. I'm still a little foggy in the noggin, but no nausea, tummy troubles etc. Praise the Lord!

[dhd2000]

Glad to hear you're feeling better! I'm gluten-free for 2 years now and feel like I have a whole new life. I also have three kids and two jobs, but I still have energy! I have been taking a dance class since October, and just signed up for tennis lessons this past weekend. It is amazing what a change in your diet can accompllish. I bet that as you make these changes, the more your children eat gluten-free, the better they will be too. My kids have tested negative for celiac, but do eat a lot gluten-free, as I'm the cook in the house. They do eat some gluten, some school lunches, though I mostly pack for them, and some at friends' houses. But we can all tell if they eat too much, as they get tummy aches and tired. Anyway, I know it's a difficult transition and it's not quick, but hang in there, it continues to get easier and I really hope you continue to feel better each day!

Dee in NC

[tiredofbeingsickandtired]

Thanks so much! I'm in NC too

I have an appt with an oral surgeon next week, they wanted me to go on and have the work done today but I just don't feel strong enough. Not thrilled with having to lose this tooth, but the root is cracked, could've happened from the last surgery. I ran into another lady whose son has to be gluten-free in Chic Fil A, she was so sweet. I'm finally starting to enjoy food a little bit, though sometimes I'm just scared to eat. I read that Wendy's chili is gluten-free but I'm still not brave enough yet.

[ang1e0251]

I'm really glad you are feeling better. Just wanted you to know that I have eaten Wendy's chili several times at different locations as well as the baked potato and have always done well with it.

I also hear 5 Guys is a good place but we don't have one locally so I've never been.

[tiredofbeingsickandtired]

I'm really glad you are feeling better. Just wanted you to know that I have eaten Wendy's chili several times at different locations as well as the baked potato and have always done well with it.

I also hear 5 Guys is a good place but we don't have one locally so I've never been.

Five Guys has had me nearly in tears for the past several hours

I've been so wary of eating out since going gluten free, but after all the great reviews for 5 guys I thought I'd try it out. Well after being chained to the bathroom for several hours I can at least scratch ever having a burger from there off my list.

Not sure if the fries can be so easily CC, but the burgers are too risky IMHO. I just started eating it (took ONE bite) and realised there were bread crumbs and sesame seeds in the foil. I stopped eating & took it back... now she was very nice and apologised, said she just took the bun off the foil and wrapped the burger up. I'd been very clear in explaining that I couldn't have the meat come near the bun etc. But she probably had no clue that I could really get sick. I'm sure she thought "who really gets sick from bread crumbs?". I kinda thought I would be ok since it was such a small amount. She refunded my money and gave me another burger that had been prepared with different gloves, fresh foil, etc. But sadly I started bloating, lots of pain and getting sick So hopefully my experiece will make them more aware, but I'm not risking it again.

I'm going to gluten-free my kitchen tomorrow. I have several nice tupperware containers with flours, glutened baking stuff, etc. Is it safe to toss them in the dishwasher and refill with gluten-free stuff?.... or should I just run them over with my car, set them on fire, mail them to Zimbabwe before I ever let them come in contact with me again? Still in pain from last glutening so I'm stressed about staying away from this wretched stuff.

I have a toaster convection oven, its nice, so nice. But can I ever clean out all the gluten or is it a total loss? My baking pans, can they ever be cleaned enough...I was a cake maker so theres ALOT invested. My nonstick cookware?

oh and I'm going through grits and bacon withdrawal, is there a brand that is gluten-free doesnt say "processed in facility that has wheat"? Is there a gluten-free bacon?

[curiousgeorge]

Parchment paper is your friend for you pans.

[tiredofbeingsickandtired]

Parchment paper is your friend for you pans.

Thank you!! I parchment about 70% of my baking anyway, I was wondering if any could leach through. I used to have the idea that I could continue to bake with wheat, but I just can't risk getting sick. I'm kind of looking forward to some serious experimenting in hopes that I won't be tied down to store bought stuff. When I am not so tired I'm going to really clean all my pans as best I can. I think my pizza pans will probably have to go, because I can't get each and every hole clean after many years of tossing dough and making pizza's.

[ang1e0251]

I think your Tupperware should be ok with a severe handwashing. I've been using mine that way. I read others say toss the toaster oven but I don't use one so I'm not sure on that one. If it's like a toaster then I would toss or like you said, run over with your car, burn and mail to Zimbabwe. I use all my old baking pans just lined and no problem.

I'm really sorry about 5 Guys and I said I heard they were OK. Now I feel guilty. I will always inspect the burger wrapper from now on.

[cyberprof]

I'm going to gluten-free my kitchen tomorrow. I have several nice tupperware containers with flours, glutened baking stuff, etc. Is it safe to toss them in the dishwasher and refill with gluten-free stuff?.... or should I just run them over with my car, set them on fire, mail them to Zimbabwe before I ever let them come in contact with me again? Still in pain from last glutening so I'm stressed about staying away from this wretched stuff.

I have a toaster convection oven, its nice, so nice. But can I ever clean out all the gluten or is it a total loss? My baking pans, can they ever be cleaned enough...I was a cake maker so theres ALOT invested. My nonstick cookware?

oh and I'm going through grits and bacon withdrawal, is there a brand that is gluten-free doesnt say "processed in facility that has wheat"? Is there a gluten-free bacon?

My opinion:

Non-stick cookware - toss

Metal baking pans or glass baking pans - keep (I use parchement paper too)

Tupperware - if relatively new and unscratched maybe (but I tossed mine) (definitely throw out plastic containers used to store flour)

Toaster oven - no (I wouldn't risk it...maybe if you have one that you can take apart to clean...maybe)

I've not found any plain bacon that is contaiminated. Try Hormel. Hormel (like Kraft) is one of those companies that, if there's gluten in it, it will say it clearly on the label...no guessing. I use Costco's Kirkland Brand pre-cooked.

Grits...my daughter is going to UNC-Chapel Hill and I grew up in the South. Until this month there were no certified gluten-free corn grits that I could find.... now there is. See this about Bob's Red Mill gluten-free Corn Grits (and gluten-free Cornmeal for cornbread/spoonbread). Open Original Shared Link

Bob's Red Mill has one of the few gluten-free oats for oatmeal, deserts, meatloaf, although there are others. You can mail order his stuff if they don't have it in NC.

I'm so happy to hear of your improvements in the short time you've been gluten-free! I hope you continue to get better fast.

[cyberprof]

Thank you!! I parchment about 70% of my baking anyway, I was wondering if any could leach through. I used to have the idea that I could continue to bake with wheat, but I just can't risk getting sick. I'm kind of looking forward to some serious experimenting in hopes that I won't be tied down to store bought stuff. When I am not so tired I'm going to really clean all my pans as best I can. I think my pizza pans will probably have to go, because I can't get each and every hole clean after many years of tossing dough and making pizza's.

I hate to burst your bubble about pizza...but you won't need a pan with holes. Most gluten-free pizza dough is more like cake batter and would go through the holes anyway. It's best to just toss that since you can't get it clean anyway.

I found a pizza crust that I love Love LOVE but it took me about 6-8 months to "forget" what real pizza tastes like and to find a recipie - I tried eight! I can post a link to my favorite if you like, but wait a few months. And there are variations- different crusts appeal to different folks.

Eat lots of healthy food (veggies, fruits, beans, meat, fish, eggs) and don't eat too many processed gluten-free foods at first. Then start experimenting on crusts.

[Ahorsesoul]

"..well they think I'm a few gluten free fruitloops short of a full bowl"

I love this!

[tiredofbeingsickandtired]

It would take me a year to update everything so heres the best I can do in the fewest words possible. My heart is broken, my step nephew took his life a week and a half ago, we grew up together he was only 5 months younger than me (my siblings were in their late teens/twenties when I was born). He and I went to college together, each of us had our first child at the same time. I trust God that we will all get through this, but it hurts so bad...to see my family in pain, to know that he's gone. He was such a sweet man and will be missed forever.

Other than remaining fatigue and an accidental glutening or two I'm doing much better healthwise since going off gluten. The dr is waiting on skin biopsy and another confirmation from a dermatologist, but she is confident I have DH, that combined with all the symptoms and the low nutrients she feels that the celiac diagnosis is correct. I really love her, she's been so encouraging and understanding. I'm extremely tired but I have been able to accomplish so much more even just 3 weeks of being gluten free. I've lost 12 pounds and the constant hunger is finally gone. I did have some severe withdrawal symptoms, but I seemed to take a turn at the middle of last week.

Well I've got to get to bed but I'll leave you with this. I was in the pool the other day and came up with this little poem/song, its a letting go of alot of things...a loved one that was so dear, accepting that the pain is real and that God has held us together through this. A letting go of a life that I wanted so desperately, to be a wife that stood by her husband no matter what, even when he berated me for being so sick all the time. but that husband isn't a husband anymore, hasn't been one for years, he's an exhusband that just doesn't have it in him to understand that 5 years of his kids' lives has passed him by.....and he is still so self absorbed that it doesn't phase him that he's given up the most precious gift God could ever give him. A letting go of food, letting go of blaming myself and accepting that theres been so much out of my control, letting go of anything and anyone that is bad for my health, heart and causes more pain for myself and my kids.

Letting Go Lullabye

On the way I closed my eyes and held my Savior's hand,

as I let go of the life that I so carefully planned.

There were days filled with joy as I soared upon His wings,

and when the pain was hard to bear, with those wings He sheltered me.

When I finally closed my eyes and opened to the Son,

it was then I realised my life had just begun.

My life has just begun, and I thank God for that. If there is ANYONE that you haven't said "I love you, hang in there!" to, please don't waste a minute. Give lots of hugs and kisses, and hold on to every moment with your loved ones, whether you're sick or healthy.

[cyberprof]

It would take me a year to update everything so heres the best I can do in the fewest words possible. My heart is broken, my step nephew took his life a week and a half ago, we grew up together he was only 5 months younger than me (my siblings were in their late teens/twenties when I was born). He and I went to college together, each of us had our first child at the same time. I trust God that we will all get through this, but it hurts so bad...to see my family in pain, to know that he's gone. He was such a sweet man and will be missed forever.

Other than remaining fatigue and an accidental glutening or two I'm doing much better healthwise since going off gluten. The dr is waiting on skin biopsy and another confirmation from a dermatologist, but she is confident I have DH, that combined with all the symptoms and the low nutrients she feels that the celiac diagnosis is correct. I really love her, she's been so encouraging and understanding. I'm extremely tired but I have been able to accomplish so much more even just 3 weeks of being gluten free. I've lost 12 pounds and the constant hunger is finally gone. I did have some severe withdrawal symptoms, but I seemed to take a turn at the middle of last week.

Well I've got to get to bed but I'll leave you with this. I was in the pool the other day and came up with this little poem/song, its a letting go of alot of things...a loved one that was so dear, accepting that the pain is real and that God has held us together through this. A letting go of a life that I wanted so desperately, to be a wife that stood by her husband no matter what, even when he berated me for being so sick all the time. but that husband isn't a husband anymore, hasn't been one for years, he's an exhusband that just doesn't have it in him to understand that 5 years of his kids' lives has passed him by.....and he is still so self absorbed that it doesn't phase him that he's given up the most precious gift God could ever give him. A letting go of food, letting go of blaming myself and accepting that theres been so much out of my control, letting go of anything and anyone that is bad for my health, heart and causes more pain for myself and my kids.

Letting Go Lullabye

On the way I closed my eyes and held my Savior's hand,

as I let go of the life that I so carefully planned.

There were days filled with joy as I soared upon His wings,

and when the pain was hard to bear, with those wings He sheltered me.

When I finally closed my eyes and opened to the Son,

it was then I realised my life had just begun.

My life has just begun, and I thank God for that. If there is ANYONE that you haven't said "I love you, hang in there!" to, please don't waste a minute. Give lots of hugs and kisses, and hold on to every moment with your loved ones, whether you're sick or healthy.

I'm sorry for your loss...my condolences.

On behalf of all of us here, I'd like to say "We love you...hang in there!"

Laura

[ang1e0251]

I'm so sorry for your loss. Having felt a sudden loss also, I know you are so right to appreciate your loved ones when you can. We don't know when our time will come so let those you care about know it.

[tiredofbeingsickandtired]

Thanks, I appreciate the support alot! I'm off to walk, each day I've been able to get closer to the mileage I was walking before. Its good therapy, the dogs I walk are great and it gives me some much needed alone time to pray, think a few things through, and dream a little of the life thats taking a turn for the better.

(((((hugs))))) hope everyone has a blessed day!

[Wenmin]

Sorry for your loss, Tired.

This might brighten your day a bit:

Oscar mayer and hormel Bacon are gluten free ( I personally buy Hormel)

And I've been using Quaker Instant Grits or any Quaker brand.

Haven't had any problems with either one....