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elonwy

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elonwy Enthusiast
elonwy
Posted

I think I need a new doctor. I'd been sick for months, convinced SOMETHING was wrong with me ( doctor-"its stress, poss IBS"). I read an article about Celiac Disease in Fitness magazine of all places, and lied my way to a blood test ( I swore up and down that half my family has it, which they are now being tested.). Blood work comes back positive, he schedules a Biopsy. I come back with Duodenal Ulcers and "inconclusive sprue". Evidently there is some damage, but he doesn't feel that its ENOUGH for me to worry about, and since my symptoms aren't THAT BAD, I don't HAVE to go on a gluten-free diet.

I think I got the wrong doctor. On Saturday, I started gluten-free. It's hard, but I'm soooo sick of feeling bad.

I'm not sure what my question is anymore. I'm not sure if I should be asking for a Biopsy with a diff doctor, or just go ahead with going gluten-free for 6 months and then trying to eat Gluten again for a few days ( I'm thinking Christmas ;). The Biopsy was really unpleasant. I don't really want to do that again.

Elonwy

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Jnkmnky Collaborator
Jnkmnky
Posted

I'm not a doctor, but I think you have C.D. :unsure:

You shouldn't need to redo any of the tests you've already taken and paid for. You can request copies of all of those and take them to a different doctor for a second opinion. You own those test results. Some doctors get a little *clutchy* with patient records, but you're the actual owner. :P If I were you, I'd get my results, copies probably, and make an appt with another dr. You do not have to begin the process over again. Frankly, I think you have c.d. if you had positive blood work and everything else you mentioned.

How are you doing on the Gluten free diet? It sounds like you're not getting much support. If you need more info on the foods you can have, let me know.

jenvan Collaborator
jenvan
Posted

I echo Jnkmnky--get your results and go see another doc. Many are poorly educated on celiac and still think you can only have it if you have diarrhea and are losing weight. I also get copies of my test results. Since my diagnosis, I keep them all in a file to monitor my own progress and to take with me to other dr appts. I was also given an "IBS/stress" diagnosis years ago, turned out to be a cop-out diagnosis in my case!

KaitiUSA Enthusiast
KaitiUSA
Posted

You definitely need a new doctor. Also, I think you DO have celiac. Blood tests positive and some damage...I don't know what your doctor is thinking. You need to take those results to a doctor who knows a thing or 2 about celiac.

You will find this site to have alot of really useful information. Some people on here know more than alot of these doctors which is pretty sad but true.

elonwy Enthusiast
elonwy
Posted
  • Author

I bought the Gluten-free bible, which is a huge help. I do feel really lost, and my bf is trying to be supportive, but we're both a little overwhelmed.

He's been working 12-13 hour days for the last week, and on saturday I didn't feel like eating solid food yet so I sent him to get me soup and he came back with minestrone because he didn't know semolina was a form of wheat. Luckily he brought me Miso too, but the poor thing was devastated that he'd screwed up.

He's willing to go gluten-free with me, so its not so much of a challenge, but even with the books its really hard to figure out what's ok and what's not.

The good news is that there is a Whole Foods near me, cause I went to Ralphs and figured out there was only about 18 things I could eat that wasn't produce or meat. I don't really like junk food.

Does anyone have that product guide book?

Is it worth getting?

Elonwy

KaitiUSA Enthusiast
KaitiUSA
Posted

Watch out for that book. The Gluten Free Bible is ok for experienced celiacs but can be detrimental for newbies because it has many inaccuracies as far as products and some other things go and the newbies won't really know as far as that goes.

elonwy Enthusiast
elonwy
Posted
  • Author

It really feels like everything is a case by case ever-changing story as far as products are concerned. I'm very skittish right now, so I'm not buying anything that doesn't say Gluten Free on the label. The CSA Gluten-Free Product Listing is the one I was wondering about.

Elonwy

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jknnej Collaborator
jknnej
Posted

If your biospy experience was unpleasant, it sounds like you have a lousy doctor. Mine was fine, no pain, and I was out the entire time. I would get a better doctor!

Merika Contributor
Merika
Posted

Hi,

Sorry but miso is not gluten free :( There are different kinds, but typically it is made from barley. In the case of miso soup premade, it can be very hard to tell which type of miso it is. Also, look out for soy sauce which typically has wheat in it, though there are wheat-free versions at the grocery store.

Merika

elonwy Enthusiast
elonwy
Posted
  • Author

They didn't give me enough drugs, I came out of it partway through and evidently started struggling. I only remember little bits, but enough to give me nightmares for a couple days. They gave me more drugs, and I went out again, but aaaaaaaggggh!

I'm halfway through day 3, and I swear I already feel better. I don't feel 100%, but I feel like my brain is clearer and the little scabby bumps on my head are going away.

Who needs bread anyway?

Elonwy

Jnkmnky Collaborator
Jnkmnky
Posted

Old El Paso taco sauce

taco shells

Classico sauces, even the creamy alfredo

Oscary mayer bologna, hot dogs

Chili

Nachos

Read cold cut ingreds in deli dept

Corn burritos (make bacon and egg burritos, chicken and cheese, etc)

Baked beans

Check yogurts Lots are gluten free

cheese sticks

cheese lots of kinds

rice

Post fruity pebbles/cocoa pebbles

cream cheese lots of kinds

sour cream lots of kinds

butter

Meats, veggies, fruits

Tinkyada Pastas are the best gluten free pasta. Except no substitutes.

Most pasta sauces are gluten free. Make chebe garlic sticks with additional garlic salt and olive oil as a side. Yum!

Kinnikinnick breads are great. White tapioca is what we use. Their donuts are great. Pizza crusts from them are great. Chocolate chip muffins from them are great.

Chebe bread is fabulous. Wrap it around hot dogs and bake for a corn dog. Roll flat and put chopped ham, cheese and broccoli with garlic salt for a "Hot Pocket".

We're having Chebe tonight with our beef stew. Chebe is easy to prepare. Like bisquick, easy.

You and your boyfriend can eat LOTS of regular food. Get the "safe/forbidden list and print it out. It's here somewhere at celiac.com

tarnalberry Community Regular
tarnalberry
Posted

Eden makes gluten-free miso. You always do have to check, but there are a number of types that don't have barley.

Canadian Karen Community Regular
Canadian Karen
Posted

I can't believe your doctor would say that........ Sheesh! When is the medical establishment going to wake up????? :angry:

It is very possible for you to have celiac disease (positive bloodwork) but no damage showing on biopsy. There could be numerous reasons for this..... Perhaps the sections they biopsied were not damaged yet (damage can be quite "spotty" and perhaps he didn't take from the damaged part.....). Also, it can be that it is early in the disease and you are lucky enough not to have any damage to your villi yet.....

At any rate, for what it's worth, I think you have celiac disease. And if the gluten free diet is helping, that is another sign that indeed it is celiac.

If you go here:

Open Original Shared Link

you will find an incredibly comprehensive list of products that are gluten free. There are so many normal stuff at the regular supermarket that is okay for us to have. This particular list is broken down into convenient categories to make it easier for us and also is ALWAYs current and up to date..... You have to join as a member and log in (no charge for this...), but well worth it, you would be amazed at the things we can have.

Any questions you might have, just fire away, there's a bunch of really great people here always willing to help.......

Welcome!

Karen

Merika Contributor
Merika
Posted

Elonwy,

I see from another thread you are in LA. There is a local organization celiac.org (I think) that sponsors annual events, and there are periodic local meetings - on of which is on the westside I think. I've just been to the big events, haven't checked out the little ones yet, but you can call the contact people for them and talk their ear off to get celiac info :)

There are more than 18 things at Ralph's that are gluten-free, really :) Mostly around the outer aisles, but you're healthier eating that way anyway.... Whole Foods has GREAT stuff, and if you're accustomed to shopping there at all, then the prices of specialty gluten-free foods will not shock you. :D

The stores in LA ROCK for gluten-free eating. You are in a good place. Sorry, I got no doc recommendations for you though....not really a fan of doctors, though if you want a good acupuncturist in Venice I can recommend you one. It is helpful for symptoms, and since she sees both me and my mom (also celiac), she at least has a clue about it, even if she doesn't really get it 100%.

Merika

near Sunset/Fairfax

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