Scheduled For Testing At Private Hospital

[healthy-000]

Background:

I've been struggling since earlier this summer with severe symptoms including abdominal pain and pressure (various locations), some very strange lightheadedness, diarrhea, frequent urination (especially at night soon after laying down), and have lost almost 15% of my body weight since mid-September (2010). I'm now about 115 lbs and really working hard to at least maintain my weight by experimenting with different ways of getting calories--but to keep my symptoms manageable, I eat a mostly liquid diet with very few foods.

My significant test results have included: constantly having at least trace and up to 50+ rbc in my urine (treated w/ antibiotics when it reached 50+), slightly low on the following: HGT, HCT, Sodium, Iron, Potassium (both high and low), and very low Lymph %, (all treated w/ Fergon [iron], a multi-vitamin, and extra Vitamins C and D). Other tests, including 2 CTs (regular and contrast) and a colonoscopy produced no findings (and, no significant findings from my ob/gyn.)

No illness or symptoms prior to this summer (past health: excellent health, high exercise level, and diet heavy in fish and vegetables).

I haven't been receiving optimal care where I live so I scheduled and appointment at an out-of-state medical center with a good reputation.

My questions:

My appointment is in a week. To prepare for the appointment:

- Should I stop taking any of my vitamins? (I only started taking them 2 months ago.)

- Should I try to add gluten (or solid foods) back into my diet? -- although, severe symptoms would be hard to deal with while traveling.

(I don't believe I have any method of contacting my assigned physician prior to my appointment to ask these questions.)

[mushroom]

Hello and welcome to the forum.

Does this out of state medical center specialize in celiac disease? That would be the ideal situation. However, if you have not been eating any gluten for a considerable period of time any celiac testing will most likely be negative. Alas, one week of gluten consumption will not be enough to bring your antibody levels back up to testing level. It is recommended that you eat the equivalent of 3-4 slices of bread every day for two to three months for accurate testing. But it always good to have a colonoscopy and an endoscopy to rule out any other conditions that could be causing your symptoms.

Have you tried avoiding all dairy products too?? because if you have damaged the villi in your small intestine you will not be producing much of the enzyme which digests lactose. (Some liquid diet products contain dairy) Without this enzyme, dairy will give you bloating, diarrhea and pressure. But you do need to find some high calorie foods to keep your weight up. Can you eat fish and rice, soups, stews, stewed fruits, juices? These are the kinds of foods I would try to add to my diet. Others will come on with other herbal suggestions perhaps.

The vitamins could be an added stressor to your system right now. I find that I have to stop a lot of supplements when my digestive system is not working well, and you are probably not absorbing them very well right now anyway. Something in liquid form would be the most easily absorbed.

Have you tried taking a good probiotic, and a digestive enzyme to help out the stomach. These two things in combination will often really help with digestion.

Good luck with the appt. and I hope you get some answers.

[healthy-000]

Thanks so much for your friendly reply.

Yes, I believe the facility is known for its gastrointestinal diagnostic facilities, especially for Celiac's. I was referred by a doctor friend of mine who doesn't treat me, but she knew of the facility--and she told me I looked terrible.

Their website mentioned something about not going gluten free before you get tested--not good since I've been trying to eat things that minimize my symptoms. I haven't gone 100% gluten free, but in order to keep the symptoms at a minimum, I'm only eating sports drinks with electrolytes, rice milk with very small amounts of blended banana and egg white protein powder (non dairy, no casein, whey, or "lacto"), small amounts of plain white rice and I experiment a little for dinner. Canned soups don't work at all for me (although they typically have noodles: vegetable noodle, chicken noodle, etc.). I try to eat non-processed foods too, so I'm pretty good at avoiding dairy although I did try a little butter this weekend in some whipped sweet potato just to see if I could tolerate it. (It's my first dairy since mid-August).

Will I fall off the deep end this week if I add back some high gluten foods? (kinda scary) I'm trying to work a 40 hour week. Also, what about fat? Fatty foods have also been scary--but I think I'm lacking fat in my diet.

Thanks again--am glad I found this site.

[mushroom]

Thanks so much for your friendly reply.

Yes, I believe the facility is known for its gastrointestinal diagnostic facilities, especially for Celiac's. I was referred by a doctor friend of mine who doesn't treat me, but she knew of the facility--and she told me I looked terrible.

Their website mentioned something about not going gluten free before you get tested--not good since I've been trying to eat things that minimize my symptoms. I haven't gone 100% gluten free, but in order to keep the symptoms at a minimum, I'm only eating sports drinks with electrolytes, rice milk with very small amounts of blended banana and egg white protein powder (non dairy, no casein, whey, or "lacto"), small amounts of plain white rice and I experiment a little for dinner. Canned soups don't work at all for me (although they typically have noodles: vegetable noodle, chicken noodle, etc.). I try to eat non-processed foods too, so I'm pretty good at avoiding dairy although I did try a little butter this weekend in some whipped sweet potato just to see if I could tolerate it. (It's my first dairy since mid-August).

Will I fall off the deep end this week if I add back some high gluten foods? (kinda scary) I'm trying to work a 40 hour week. Also, what about fat? Fatty foods have also been scary--but I think I'm lacking fat in my diet.

Thanks again--am glad I found this site.

For fats you could try some avocado, some nut butters (almond, peanut) if you don't have a problem with nuts. These are easy on the system and 'good' fats. If you have been significantly avoiding gluten, you will probably have a more extreme reaction to it now than formerly, as your body gears up making antibodies to fight it. IMHO, just one week of torturing yourself with gluten is not going to increase your likelihood of a positive test result though.

[sb2178]

If you haven't been eating totally gluten free for very long (two weeks? hard to tell from your post but this sounds like the diet shift was very recent), I'd add it back in full force and just accept that you will likely need to use sick time. Hopefully you have that to fall back on.

If it's been much longer than two weeks, there probably isn't much point in adding it.

[healthy-000]

Yes & thank you. It has only been a couple of weeks and not super consistent (avoiding dairy has been very consistent, but I have been getting gluten here and there--I don't understand how to avoid it completely, it's almost an impossible task for someone new.)

Per recommendations, ate an equivalent of about 2-4 slices of bread (from a bakery loaf so it didn't work out into neat regular slices). Plus, had 2 small servings of veg soup (light tomato broth based). Not sure which did it, but had a terrible night, no sleep. This was after coming off a pretty darn good day and weekend.

This is not looking good

Dear Santa,

This year for Christmas I would like a dx of Giardia (NOT Celiacs)

With Lots of Love & a Bowl Full of Jelly,

Pizza and Beer Lover

[healthy-000]

Results are all in and there is no indication of anything. (I had tons of tests including biopsy.)

No explanation for sudden weight loss or any other symptoms.

Not sure what to do next except for taking lots of meds and trying to deal with it. frustrated.

[mushroom]

I would give a gluten free diet a strict three-month trial, and also avoid lactose for that period too. See how you feel at the end of that time.

[healthy-000]

I would give a gluten free diet a strict three-month trial, and also avoid lactose for that period too. See how you feel at the end of that time.

I suggested to my local doc either this (above) or eating lots of gluten and getting re-tested (a recommendation from the out of state hospital.) He told me to just go off gluten and see how I felt.

However, I also recently purchased 'Celiac Disease, a hidden epidemic' (Green & Jones) and read that it is not advisable to go gluten-free without a diagnosis because 1) you may be subjected to a strict lifelong diet unnecessarily and 2) it can confuse later test results--specifically, the gluten challenge is controversial (some people don't have repeat symptoms for up to a year after starting to eat gluten again.)

Now, I am confused. Although I do feel better, I have been eating two to three times as much as I had in the last three month. Maybe I just had a virus or something that is now clearing up?

Should I just tell him it worked and start eating the stuff like mad and get re-tested in a month or two? On the flip side, being sick over the holidays will truly suck.

[nora-n]

Tests will be not so clear if you go gluten free before the test.

Did you tell them?

And, what blood tests did you have, and when?

I have no diagnosis either, and my tests were negative, and I ate very little gluten before I got sick, and was low-carb when I noticed I reacted to gluten and milk when I had some when we went to family meetings.