Update time!

[Skyddle27]

Hey Everyone!
    How has everyone been? I think last time I updated, I had finally gotten my evil primary care doctor to give me a referral to a GI doctor. Well, I went to the GI doctor and he seems great. I told him what was up and I told him about the family history of Sjogren's and now I am waiting to hear back about the blood work!!! He sent me to his lab tech as soon as I left the exam room. He said that even if I have it, he thinks there is something else on top of it that has caused such bad stomach problems and weight loss. I just had an endoscopy done this week to check for ulcers and biopsy on my esophagus. I technically saw the doc for that but I barely remember talking to him before the sedation kicked in lol. I was sent home with an envelope that says that I have GERD and some erosion to my esophagus as a result of it. I am not suprised about that at all. I also know that isn't causing all of my GI symptoms though. I am also waiting to hear back about a blood test to check for a gluten allergy. Now that I am just waiting on the test results... I am hoping it is negative lol. Regardless, it is so nice to have a doctor taking me seriously.  This guy said that if all the tests come back negative, he isn't giving up and diagnosing me with IBS. He was just as appalled as the rest of us that the PC doc would suggest that. Even if it takes a few months of testing, I have complete faith that at least my tummy will be feeling a little better soon.
   On a slight downside, I cried last time I stepped on a scale. My son brought home strep-throat, stomach flu, and a cold all in one go. I started showing signs of strep and went to get checked out. I weighed in at 103!! I had gone back up to 108 so that means I dropped 5 more lbs. I was put on antibiotics and by the second day of them, I couldn't keep water down and I went to the hospital for uncontrollable dry-heaving and passing out. I found out on day 4 of the antibiotics that I only had the cold and stomach flu lol. The antibiotics, of course, only upset my stomach more. I was on the clear liquid diet for about a week. I don't know how much I lost with that because I wouldn't look at a scale. It was too depressing lol. I am back to eating real food now and even though my 4 year old can eat more than I can, I am feeling much better. Well, it has been a very lazy day today so I am going to at least go for a walk to check the mail now. Take care everyone!!
Much love,
Rhiannon

[daydreamer]

Rhiannon,

I'm new to this site and wanted to say hi. Unfortunately, it seems as if you're going through a lot  and you're young just like me. I'm 29 and have an 8 year old son. I've also had problems with my stomach including acid reflux, nausea, vomiting, abdominal pain etc. It's frustrating! All of these symptoms plus a whole lot more make me feel much older beyond my years. I just had an endoscopy and it didn't show anything. In a way I wish it did because then I wouldn't seem so nuts for complaining about my symptoms all the time. My doctor is great, but I feel as if I had an actual diagnostic finding to my symptoms I'd be taken more seriously. Like, "ah yes I see what the problem is." "Oh yeah, like I've been making it up all along just for the fun of it."  Look forward to chatting with you. Take care and best wishes. Kim

[pudmott]

Hi Rhiannon,

Sorry to hear that you have been through the wringer. Don't you just love your kids when they bring home pressies in the form of germs. Bless their little cotton socks. I hope you are continuing to be on the mend and can slowly increase your solid food intake. Are you able to drink thinks like protein shakes or things like that?
It sounds like you may benefit from seeing a dietician who could put you on something like a high protein, high energy diet that would help you gain a bit of weight and help maybe fight off some infections.

Keep us posted how you're going honey.

Pud

[JannaLee]

Hallelujah Rhia!  I have been so worried about you!  And really angry about your other doctor being such a tool.

It is wonderful you found a better doctor and already some answers!

Good for you sweetie! 

Pud is right about trying to get a protein shake down if you can.

Janna

[Scottietottie]

Hi 

I'm really glad you've found a doctor you can have some faith in. It makes such a difference. I'm sorry to hear about your recent experience. Sounds horrendous!
Hoping your test results come back soon and that treatment can begin.

Take care - Scottie 

[Pooh]

Hi Rhiannon,
Wow! sounds frustrating in deed. 

Just wanted to let you know, I have a few extra pounds if you want them.  Just let me know and I'll see what I can do to send some your way.   I sure would like to see my scale go in a downward direction.  Can't seem to get it to budge for over 3 months now.     Still I'm not going up so that's a small step.

Take care dear and I hope things begin to look up for you.

Hugs, Pooh

[lynnmarie219]

Hi Rhiannon,


I'm so glad to hear that this new GI doc is a keeper. Its great to hear that is is listening to you and not giving up if the answer doesn't fall from the sky on the first try....and that you feel you can trust him....that is so important!


Hang in there and I hope you get more answers soon, and you can start treatment to give you some relief!

[Patze]

Hi Rhiannon,

I'm glad to see you back!!!  Boy am I glad that you've found an gastro that is a keeper (and I'll keep the old fingers crossed for a negative result on the gluten test), especially with that GP of yours!  Any luck getting a referral to the rheumy?

I'm with Pooh, I would sure like to see my scale go south instead of north!  The others are right though, can you see a dietian?  I know some insurance companies won't pay for a consult with them, but you might want to see if they will let you consult with one.

Take care and keep us updated!

Patze

[Skyddle27]

I got a call from the nurse at the GI center yesterday!!    All of my test results were back. She told me that the biopsies done during the endoscopy didn't show any cancers, my stomach is inflamed and I have damage to my esophagus. With the blood work, everything came back normal!! The biopsy showed signs of the gluten allergy though...so more blood work to check my genetics. The nurse was very quick to explain that a lot of things just don't show up in blood work all the time. I could have the same tests run in a few months and have everything come back showing something. They are going to focus on the wheat allergy first. All of my symptoms (even the achy joints), except the dry eyes, can actually be summed up by GERD and Celiac disease. I have an appointment with a Nutritionist on Dec 2. I plan to browse the store this afternoon for protein bars. When my youngest brother was 3, he was diagnosed with a birth defect that caused a massive kidney infection. The poor thing lost a lot of weight. We put the weight back on him with Slimfast. He would drink one with every meal. I might try that slimfast diet as long as my stomach allows (and as long as it doesn't have any wheat I guess). My stomach pretty much hates dairy right now, but seeing how it is inflamed, I am not suprised. The nurse assured me that if they hit a dead end with the wheat thing, and if they can't find something else that covers all of my symptoms, they will revisit the Sjogren's idea. Since it definately runs in my family, they say I should not write it of completely, because it may not show up on blood work until much later, but for now I can relax a bit. I will not be leaving this board though! I figure, I still have many of the same symptoms as you guys (and girls), so why leave such a supportive group of people because my aches and pains don't have the same base diagnosis?  Love to all!
- Rhiannon

[JannaLee]

This is very good news.  You are seeing a proactive doctor who is investigating to find answers.

I agree there is no indication that you DON'T have Sjogren's because around half of people with this disease do not present the blood factors. 

My dear Rhiannon, I am so hopeful you will get this turned around.  It's too early in your life to be feeling poorly.

Janna

[MusicGuy]

Good to see you getting some results and finding a doc who is trying to help you out.  I came found IBS many years ago.  the incredible pain/cramps come once or twice a year.  The trick is carrying the meds with you at all times and recognzing the warning signs.  it took me awhile but I'm able to feel it coming and minimze the bout...or avoid it completely.  My typical month is January....I don't know why, but it is.

good luck to you!
Dave

[Seeker]

G'day Rhiannon, sorry you are having such a rough time of it.  It's times like these that family means more than anything in the world. When your down and troubled, make sure you love that child of yours even more.  Remember you also have a family here that is willing to share and give you strength.  As Pooh says "Remember your not alone".


Seeker

[Scottietottie]

Hi 

I'm pretty sure Slimfast has soy rather than wheat - but you know to check it out anyway!

Take care - Scottie 

[Skyddle27]

I was delighted to find bunches of protein bars that are wheat free, dairy free, peanut free etc. (peanut free is good because my guy is allergic to peanuts) at the store by me. Slimfast is also good to go! I am stocked up lol. I was surprised to see the amount of nutritional supplements that are wheat free. I probably have a couple of weeks worth of bars to snack on    I am very fortunate to have this as my online family and support system. You all are the best.
- Rhiannon