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I'm Feeling Hopeless


Bubba's Mom

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Bubba's Mom Enthusiast

I've been sick for a long time. I kept telling my Dr. I felt awful and had pain in my upper right quadrant, sometimes nausea. My Dr. ordered a gallbladder ultrsound in May 2010. It showed no stones, and my Dr. said there was nothing wrong with me.."eat Tums". I had rectal cancer in 2003, so having digestive "issues" scared me. I also had a yeast infection/vaginitis which was given 3 courses of treatment and then the Dr. said "we're just not going to treat that anymore". I've lived with it.

My health has gone downhill since then. In early Jan. of 2011 my husband came home from Mexico with some kind of bug. I got it too. Don't know if it was a virus or some other kind of bug? He got better..I didn't.

I got so I was so nauseated I couldn't eat, and what I did eat caused bloating and gas and GERD bacame much worse. I had pain in the URQ and LRQ. I started losing weight. My Dr. said there was nothing wrong, but when I insisted SOMETHING wasn't right he ordered a CT scan. It showed enlarged intestinal lymph nodes. He said maybe I should find a GI specialist in a snarky tone.

I did and she ran the blood panel for Celiac, a stomach emptying study, and an endoscope. I was found to have severe villi flattening and a duodenal ulcer. The blood test came back negative, but she DXed Celiac.

I went gluten free and the severe bloating, GERD and gas went away, but I didn't feel better. A food log showed that soy was bothering me. I omitted that. Still felt bad and went looking deeper into supplements and found that some had trace soy or things derived from soy oil.

PCP didn't agree with my Celiac DX and was unco-operative about blood tests to check vitamin/mineral levels. My insomnia and anxiety became much worse, to the point of me only sleeping an hopur or two a night. I asked for thyroid testing and my TSH level was checked and found to be "fine"(1.14) Was given sleep med that didn't work. Then was given Trazadone and it helped some.

I saw a different Resident when mine wasn't available, and asked for the blood tests again. He ran them and found I was very low on iron and said to start a supplement right away.

Still not feeling good, I went to a new GI. He ordered the genetic testing for Celiac, a HIDA scan, and rescoped. Right after the scope he said my tummy was very red and I had intestinal scalloping indicting damage. He said I might have refractory sprue? :o He said the biopsy report would tell more.

I called for the result of my tests and was told my gallbladder was working at 30%-I should consult a surgeon about having it removed, my blood work was negative for Celiac, and the scope showed moderate to severe villi flattening. I was told I should see an allergist because I don't have Celiac.

I HAD allergy testing, by skin prick (90+ items) and ELISA for the main allergens,and showed no reaction to any food.

I've cut out dairy, soy, gluten, most carbs. I have to take anti-nausea medicine to eat, and I break out into a sweat as the food leaves my stomach and enters my intestine. I still have trouble sleeping, high anxiety, still losing weight. I feel like I'm just slowly dying.

I got a "new" PCP. He's 93. I just saw him. He recommended I try to keep my gallbladder, it might heal? He gave me an RX for nausea med. and ordered a blood count test. He says he doesn't know what else he can do for me. When asked if I could try going off my PPI he said it was a good idea. Long term use has a lot of side effects.

I'm at a loss! :( Each day I feel weaker, and I feel like I'm slowly slipping away. Anybody have any ideas what I should do next?


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  • Replies 82
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rosetapper23 Explorer

Regarding the doctors, FIRE the lot of 'em!! My gosh--so much incompetence, it makes me scream! First, I do NOT agree with the physician who says that you don't have celiac. If you've been following a gluten-free diet, then your bloodwork is, of course, going to come back negative. It sounds as though a lot is going on with you, and I don't know if it involves your endocrine system, your gallbladder, or your vitamins/minerals, etc., but you definitely need help. Perhaps you have a yeast overgrowth? I can't believe your doctor told you to "live" with your yeast infection--that is incredibly lacking in compassion. I realize you've already seen a lot of doctors, but it sounds to me as though you need to find some COMPETENT ones.

Bubba's Mom Enthusiast

I wondered about a yeast overgrowth. How do they test for that? My new PCP has told me he is willing to order tests if I want. I just need to tell him which ones to ask for. He's 93, and very sweet, but he told me that Celiac was a rare disease, so I don't think he knows much?

The new GI ran the genetic test. He said I test negative. He has suggested I find a surgeon for the gallbladder, and I was told he is going to refer me to an allergist when I go back for my next appointment. :(

I was supposed to go back to him 2 months after my first visit in mid December. When I tried to make my appointment I was told "the book doesn't go out that far. Someone will call you to set up an appointment." I never heard back, so I called on Friday. I was told they're completely booked for Feb and are working on March. They don't know why nobody called me.

It's amazing to me that the GI would tell me I *might* have refractory sprue (intestinal lymphoma) and not get back to me on that!

I have NO idea how to find a GOOD Dr.

rosetapper23 Explorer

Bubba's Mom,

I'm sorry--I'm sick with the stomach flu right now, so I'm not prepared to do a search on candida and candidiasis...though I wish I felt well enough to do so. Perhaps you could re-post with a thread asking about testing for yeast overgrowth.

I do hope you start feeling better soon--I'm worried about you!

ciamarie Rookie

My (not an expert) opinion would be to get some good probiotics. Udo's choice has one for yeast control, with a spectrum of bacteria (8 I think) and extra acidophilus. Some on here suggest Culterelle, I'm not sure if it has acidophilus though.

Second idea would be to eat (drink) meat and vegetable broths, and very well cooked vegetables and see if you handle those. Maybe add in some soggy rice or rice noodles. It sounds to me like your digestion needs to heal and needs food that's easy to digest. Do that for a few days, or weeks?

About the 93 year old doc, it used to be that Doc's were told that Celiac is very rare, only affecting 1 in 10,000, and one site I visited recently said it was thought to be 1 in 5000 until about 2001 when they realized it's more like 1 in 133. So it's far, far more common than previously thought. Especially with the newer 'higher protein' wheat that's grown.

Bubba's Mom Enthusiast

thanks so much for your responses.

I sort of crashed yesterday. I got like I was going to faint when I went for my allergy shots. I came home and sat down and got very weak and dizzy..and threw a couple of PVCs (short burst odd heart beats) Which then gave me chest pain and an axiety attack. I thought maybe it was low blood sugar, so I quickly ate a yogurt and ate a handful of blueberries and took a Xanax. I went to walk to the chair and my knees sort of buckled. I called my husband who was out of town. My mind wasn't working right. He got ahold of my son and he took me to the Hospital. They kept me overnight. My blood sugar had dipped and I was dehydrated. The combo nearly took me under.

They kept me over night all of today for observation. I was discharged after eating tonight with orders to call in the morning to get the referral and arrangements for Mayo clinic.

My Dr. suspects Whipple disease, which I haven't looked up yet. Just wanted to check in and will report back later.

You guys are the best.

Darn210 Enthusiast

Bubba's Mom,

I don't have any advice. I just wanted to send some moral support your way. I hope the Mayo clinic will take a look at the big picture and provide you with some answers and some solutions . . . and I hope it all happens quickly.

Hang in there and let us know how things go.


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pricklypear1971 Community Regular

Good luck and keep us posted.

squirmingitch Veteran

Dear Bubba's mom, I am praying you are at long, long, last getting the testing you need to get the answers you need & getting the proper treatment you need! You are certainly one sick girl who needs to be listened to instead of shuffled around & blown off.

I just looked up Whipple's & it does seem like a good possibility. The enlarged lymphs in the abdomen, the malabsorbtion & other things you mentioned.

Whipple's or no; at least you are finally getting some doctors who know what they are doing & that's way overdue. I hope you are finally getting some much needed nourishment & will be on the mend. Whipple's is a long treatment road if it is that.

Please let us know how you are doing when you can. We're pulling for you!

rosetapper23 Explorer

It sounds like Whipple's to me, too. That would explain what your doctor saw in the scope and the enlarged lymph nodes. At least, Whipple's can be cured with antibiotics. Please keep us posted on what you learn, okay?

Bubba's Mom Enthusiast

I finally heard back from the Mayo clinic. We thought I'd be sent right there. Nope..they said they could get me in in April. I told the lady I probably won't be alive in April. I told her that I'm still losing weight and growing weaker by the day. I told her my Dr suggested I may have Whipple's disease, and left untreated it's fatal. I have had it bad enough to have strong symptoms for almost a year now. She said she'd see if they could get me in sooner.

Several phone calls to my Dr's office asking if they could pull any strings and the booking people from Mayo my appointment is now March 6. I can call daily to see if there have been any cancelations that might get me in sooner. I hope I can make it until then, and have enough strength to get through the Airport and sit upright to fly.

When I went to the hospital because I threw a couple PVCs and got chest pains and almost fainted, my Dr. came in to see me the next day, and he asked "what I hoped to accomplish by going to the Hospital?" I told him I was hoping to not die.

His attitude has been very flippant and he's acting like my health problems are no big deal.

faithforlife Apprentice

Have you looked into the candida diet.com ? My mom is doing it and experiencing a lot of relief from constant abdominal pain. She too has a resistant fungal infection. She also has had cat scratch fever (from Mexico) and was sick for months with that some years back.

squirmingitch Veteran

Oh Bubba's Mom, this is heartbreaking! Okay, can you try for a different Mayo Clinic? You are aware there are ones spread all over the country right? Barring that; how about the nearest BIG city to you? A specialist there? Or some other well known hospital such as Shands. I'm assuming you are in the US. You need treatment NOW!

Was it a Dr. at the hospital who said he thinks you may have Whipple's? Can you not go to him?

And yes, there is a candida diet And I know someone who did it & it's the only thing that cured her. She had been getting shunted too. But if you have Whipple's then you have bigger problems than the candida & that diet will likely do you no good at this point.

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DO NOT GIVE UP THE SEARCH! And if you can't get an appointment then just GO there & go through their ER.

Bubba's Mom Enthusiast

I had started on a diet that's supposed to starve out yeast. Unfortunately, it cuts out all grains, starchy vegetables, and sugar. It's pretty hard to take in enough callories to sustain me.

Since being in the hospital I've gone back to eating some grains, and starchy vegetables. I was told I need to take in at least 1800 calories a day. I figure I might as well get the calories in and hope they test for Candida at Mayo?

In December I also asked this GI Dr. about SIBO. He brushed me off on that, but someone called from his office this morning and said I'm to start taking Diflucan for it. They faxed the order to my pharmacy and they can't get it in until tomorrow. If I have Candida, the anti-biotics will make it worse? :( On the other hand...I hope it doesn't sku any tests that Mayo wants to run?

The Dr that first mentioned Whipple's was my GI's assistant. He came in to the hospital in place of my Dr. who was in surgery that day. I saw my GI later in the day. My GI is thinking that's what I have. He said they can't test for or treat it here. I need to see a specialist.

My appointment at Mayo is now moved up to Feb.6. That's better. I was told I should still call daily to see if there are any cancelations that might get me in sooner.

squirmingitch Veteran

Hallelujah!!!!!!!!!!! Feb. 6th is a LOT better than March! I'm so glad to hear that. Whew! And hoping you can get in even sooner.

As far as candida & antibiotics go I have heard things along the lines of what you're saying but I personally can't say. I know there are others here who have a far better grasp on that than I. And if it will sku any tests at Mayo ..... why don't you ask them to check on that next time you call them? I don't know if you can get an answer out of them as to that but it's worth a shot.

As far as your eating goes; I say at this point it's more important for you to get some calories & whatever nourishment you can than to worry about if you're getting gluten or worry about starving out yeast. Just IMHO. I do imagine they will test for candida at Mayo. Be sure & talk to them about it. Make your notes for talking points to them & make sure to take them with you. You could also take a highlighter marker & scratch each point off as you cover it with them. Remember to take your records from this most recent hospital episode as well as everything from all doctors since this stuff all began. I know you know all this --- I'm just trying to remind you.

And fire ALL your present doctors!!!!!!! Bunch of jack$%##%!

Please keep us posted. I know we're all worried about you.

((HUGS))

Bubba's Mom Enthusiast

Thanks so much for your support!

My GI was supposed to fax my medical records. I was told it was 26 pages. I also have all of my medical records because I was in the process of switching PCPs and haven't delivered them to the new Dr. yet.

I have my folder with important points written down. Thanks for reminding me of that.

I hope Mayo can get me sorted out. I don't know if I'm going to want to follow up with the newer GI? He's an arrogant *****! :angry:

squirmingitch Veteran

Screw the newer GI. I always think it's good for docs to be a bit cocky but there's a big difference between a bit cocky & arrogance. It really riles me the comment he made to you about what were you hoping to accomplish going to the ER. Rubs me wrong.

Aly1 Contributor

Wow I can't believe your doc said that about going to the ER! Um, they only keep you overnight if you need it! What an a$$, pardon my french, I have absolutely had it with docs.

I am so sorry for everything you are going through! My heart goes out to you. It's so hard to keep fighting when it seems no one gets it and you haven't got any energy left at all. Please keep us posted. Re the antibiotics - yes they will make candida much worse. Make sure you take as much probiotics as you can to battle it.

Good luck, I will be thinking of you. I went to Mayo in MN and it was very comprehensive. They failed to dx my GI, but I present totally neurologically and this was back in 96 before most docs knew GI was a real issue. So I don't hold it against them. Too much. :)

One last thing. If by some chance mayo does not work and you are still physically capable, I know of a great doc in NYC who has been coined "the real dr house". He specializes in medical mysteries and is the only doc out of about 20 I saw, to ever help me. He LISTENS, BELIEVES and TAKES YOU SERIOUSLY. He does not, however, bother with insurance companies because they interfere with his ability to practice medicine the way he wants to. He's pretty much a genius who loves to figure out difficult cases that other docs avoid. For anyone who's interested, his name is Dr. Thomas Bolte. (Small caveat: He has a lousy phone manner and since he is on his own with no office staff he is not great about returning calls. So you do have to be persistent at times. But for the desperate person who can overlook those faults he is...priceless.)

Bubba's Mom Enthusiast

Thanks Aly. I hope they can find some answers for me.

The Dr. you found is really interesting. I'm so glad you found him!

I hope he doesn't have a crew that will go to my house to snoop..and he skips the part where, like House..he decides he just HAS to open my brain and poke around?! :D

Aly1 Contributor

Lol, well hey, whatever it takes to get better, right?! He did actually have a case where he went to a woman's home and discovered it was located over a previous chemical dump site. He's a very interesting guy.

Do keep us posted, I will be thinking of you when Feb arrives, and remembering my own Mayo trip. Are you going to the one in MN or ?

Bubba's Mom Enthusiast

LOL..that Dr. really is like House!

We're going to the Mayo in MN. We found a Hotel with a kitchenette so I can get a few things for meals. Cereal and coconut milk at least.

I don't know if they admit people for testing? The appointment I have is considered a consultation. We're expecting the tests to be done as an outpatient? I hope they can do whatever tests they'll do in the one week time frame!

Aly1 Contributor

Did you go with a hotel recommendation from them? I ask bc my mom and I stayed in one that was super close - and connected to an underground tunnel system that takes you up into Mayo. It's...kinda cool :). So you just go back to your room between tests to rest if you so choose, or there's a small shopping concourse on a lower level where you can kill some time. I got a great sweater there actually :).

There's a Mayo store in the main level where I rented a scooter; I think it was $25/day but who knows if my brain is remembering that accurately. It was also 2006 so the price could have changed.

When you arrive at some point they will give you a schedule of the tests they will be doing, when and where in the building, and they will add tests if they see fit.

For the airport I recommend if you are weak that you ask your airline for a wheelchair. They will give you one and someone will even push you through the airport to and from your gate (and, you get to jump security lines and get on the plane first.)

squirmingitch Veteran

Glad you popped in here Aly1! What great info. for Bubba'sMom! How fantastic that you've been where she is going & can give her all the 411. We're all so worried about her. Your Dr. House sounds tee-riffic!

Aly1 Contributor

Glad you popped in here Aly1! What great info. for Bubba'sMom! How fantastic that you've been where she is going & can give her all the 411. We're all so worried about her. Your Dr. House sounds tee-riffic!

I have no idea how I missed the original post but when I read it tonight I was worried too. Bubba'sMom gives such great advice...it's funny, for some reason I assume everyone on here who gives great advice must be all cured and feeling well, so I was really sad to read about all that's been going on. It wasn't very long ago that I was so weak I had to choose which counter in my kitchen I would wipe that day -and I was only able to do that two days a week. I know what it feels like to see your life fading away and have no one figuring out why, despite your best efforts to get help. They really do such a comprehensive job at Mayo so hopefully they will figure out what's going wrong here.

PS. I love your screen name Squirmingitch!

Aly1 Contributor

Oh another note Bubba'sMom - the tunnels under Mayo are pretty long. I don't know if it's the case with you but if walking is a problem for you energy-wise perhaps you can send hubby to get that scooter and bring it back to the room for you. Something to consider if you need to conserve your energy, it sounds like you do!

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Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
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