Not Going Well

[cdfiance]

As I posted earlier, my fianc

[jerseyangel]

My heart goes out to both of you, Ryan. I did have one thought--could her doctors possibly change the antibiotic that she's taking?

It really sounds like you have everything else covered. I would call and let them know that she throws up the meds even before they can be absorbed--hopefully they'll try her on something else.

I'll keep both you and Alex in my thoughts

[VegasCeliacBuckeye]

Its also very possible that all of that applesauce is causing the big "D" as well. That stuff can clean a healthy person out (tremendous amount of fiber).

I concur that an easier antibiotic would help or at least some medicine to ease the nausea. The malabsorption should not cause vomiting for prolonged periods of time if the person is adhering to a gluten free diet.

Make sure you keep us updated. If you have the means, purchase "gluten free for dummies" and assist your learning curve.

You obviously have a great heart and are no doubt a strong foundation for your fiance. Keep up the good work and I sincerely hope she feels better.

BB

p.s. Will the doctors let her drink gatorade? Its gluten free!

[kevsmom]

Ryan,

Two weeks ago I was hospitalized for dehydration. I also was on antibiotics, for a sinus infection. I was having nausea and vomitting, and did not feel like eating or drinking a thing. I lived for several days on applesauce and apple juice, and the only reason I forced that on myself is that I am Diabetic and needed to keep my blood sugar in the normal range. By the time I got to my primary care doctor - I drove myself there, barf bucket in hand (We had a snow storm and I couldn't get out for a few days), He took one look at me and said "You don't look like yourself". "We need to get some fluid in you". He actually had his nurse drive me to the hospital. Upon release from the hospital, they put me on yet another antibiotic. I went to see my GI, and he put me on probiotics. Probiotics replace the good bacteria that lives in the GI system, because the antibiotics wipe out both the good and the bad. Yogurt and Acidopholis are other sources to replace the good bacteria. You might want to check with Alex's GI about that.

Another thing, you can check online at www.glutenfreedrugs.com to see if the medication that Alex is on is gluten free. My GI didn't know about that website. I bookmarked it on his computer for him. A lot of medication does contain gluten as a binder.

I agree that "Gluten Free For Dummies" (Not that I'm implying that you are a dummy ) might help you. I was able to check this book out of my local library.

We have all been where you are now - not knowing what to do. Good luck. I hope Alex is feeling better soon. We will try to help in any way we can.

Cindy

[tarnalberry]

I'm guessing it was the antibiotic that did it to her. If it had been more than 30 minutes since she took it, she does not need to take another one (and shouldn't). (Been there, done that, argued with the doctor about changing my 'script.) Definitely have her (or you) talk to her doc about switching antibiotics, if this one is going so far as to keep her from holding anything down - that's a complication she doesn't need.

Good luck, and a speedy recovery to her!

[ravenwoodglass]

One thing also that you can do as far as the antibiotic goes is to call the pharmacy and have them make sure it is gluten-free. Many times the name brand of a drug will be safe but the generic is not. She may be able to take the same antibiotic but made by a different company. The pharmacy then can call the doctor right then and get the script changed. Your a great person to try and help so much, she is lucky to have you in her life. As she gets better it will get easier.

[cdfiance]

After that depressing post yesterday, I just wanted to update that things are going a little better. We got into see Alex

[cdfiance]

I'm not sure if anyone has experience with this but I think Alex is having a bit of a weird reaction to her nausea meds she got today. She's been having nightmares and is talking/mumbling in her sleep. When I went to go to bed, she was thrashing around in her sleep and kicking me! If I talk to her and hold her she'll calm down a bit, but it's kind of freaking me out. I was able to wake her up but she was quite groggy and a bit out of it. She felt a bit warm to me so I took her temp and she has a mild fever but when she was admitted to the hospital her temp was 105 and she wasn't having anything like this so I'm assuming it's the new meds.

I found some info about her drugs (Reglan and Zofran) on the web that said they can affect the central nervous system. Nightmares/sleep disturbance would be a CNS affect, right? If anyone has had an affect like this to either of the drugs I would really appreciate if you could let me know. I don't know if I should be worried or not.

Her sleep was a little disturbed this afternoon but nothing like this. I can hear her across the hall yelling about her brother in her sleep right now. It might be a little funny if she weren't so sick but now it's just upsetting and worrying. Hopefully if I just snuggle her tight against me tonight I can keep her calm or she won't have a very restful sleep (and neither will I)!

Worried and unsure what to think,

Ryan

[Mountain Mama]

I would call the hosp or her dr's hotline and ask them if it was a side effect of the meds or anything to worry about. Poor Alex! She is really going thru the ringer right now!

[gfp]

Her sleep patterns and delerium are easily explained by her running a fever and/or antibiotics and/or the other meds but perhaps not surprising considering what she has been through.

Its also quite possible that the stuff she is going through is just the healing process. I realise it must freak you out but lots of illnesses our bodies actually feel worse once we start fighting. As for the apple sauce and stuff ... I agree it would give anyone the runs eating taost and applesauce but so what ... by which I mean I think obviously because of the celiac disease your worried about D because you associate it with gluten. If your certain this isn't gluten (and it seems you are) then its just a bout of diarrea. I mean its never fun but its not the end of the world either.... all of us here make the same connections because we are all in the same boat but its likely this D has nothing to do with gluten, your keeping her hydrated ... etc.

Keep the doctors informaed about the symptoms but don't overstress.....

Just a note here..... you really are a fabulous guy, I know all these ladies think so too BUT don'y forget to look after yourself...

You are doing everything possible for Alex, but you need to make sure that you are sleeping/eating and generally healthy in order to look after her at the moment... sorry for being a bit pushy on that but I know its easy to forget..

[Nantzie]

I wish I had more advice to add. I just wanted to let you know you're doing a great job. I know how hard this is for both of you.

Nancy

[jerseyangel]

Just checking in to see how Alex is doing. I'll bet that her sleep problems are due to the anti-nausea meds. The poor thing--won't the doctor try switching her antibiotic?

Anyway, gfp gave good advice--don't forget to take care of yourself, too!

[NoGluGirl]

Dear Ryan,

I believe the Reglan may be causing the weird stuff, then add that to the fever, and delirium is certain. I got really ill off of a Reglan/Zoloft combo several years ago. I do not tolerate but a few antibiotics, either. Alex probably is reacting to it all. The Reglan made me very ill, caused me to have dry heaves for 7 1/2 hours, made me dizzy, weak, unable to speak, could not sleep, was nauseated, and hardly able to eat. My mother actually had to walk behind me to in case I passed out. I nearly passed out twice in the shower because my blood sugar got too low.

My advice is, stick with the dry foods. Gluten free toast, crackers, cookies, etc. Make sure she eats enough to take the antibiotic. Not eating enough can make you sick as well. There is no point continuing the antibiotic if she throws it up, because it cannot get to the source of the infection when it does not stay in. Pneumonia is tough enough! I have had it twice. I have had broncchitis probably 34 times in my 24 years. I do not tolerate casein on top of having Celiac. The Pedialyte is good to continue as well. If I were her doctor, I would put her in the hospital and give her IV antibiotics. That fever is a sign that the oral meds are not working. I take Promethazine for antinausea medication. It makes me really drowsy, but is a godsend when I have been glutened or something. We will pray for you guys!

Sincerely,

NoGluGirl