Is it still a good idea to do blood tests?

[suzyq2463]

Hi,

I'm new to the forum, and I had a question about testing.

I went for an endoscopy last week primarily because there's a history of esophageal cancer in my family, so the doctor wasn't looking specifically at Celiac disease. In fact, it was only after the endoscopy that I started reading about Celiac. Anyway, the nurse told me the biopsy was negative for Celiac, and when I pushed her on this, she said they had done a gastric biopsy and biopsies of the upper intestine, and none showed Celiac. Though I don't know how many biopsies they took, I'm certain it wasn't 12 to 15 (the number I've read on these forums they're supposed to take).

But, after having read a bunch of stuff on Celiac disease over the past few days, I'm wondering if that's what I'm suffering from (I'll list some symptoms below). My main question is: would it be beneficial to have the blood tests run anyway, even though the biopsy(sies) were "normal"? Would blood tests pick up indicators even though the biopsy did not?

All of this stuff started back five or six years ago, when I had chronic back pain, numbness in hands and legs, lethargy, two blind spots in my eyes, and dizziness. The back pain turned out to be a bulging disc. As for the other problems, I was told initially I probably had lupus and then MS. After two MRIs and one spinal tap I was told that I had no lesions and only slightly abnormal spinal fluid; i.e. they can't determine with any assurance whether or not I have MS. In addition to the symptoms above, I've had loose stools (off and on, lately pretty chronic) and constant, very painful gas (if I eat or don't eat). The only relief I get from the gas is laying straight on my back for at least an hour. I still suffer from fatigue, dizziness, fuzzy sight, and sometimes nausea.

The reason I'm checking into Celiac is because most of my symptoms would be explained if, indeed, that is what I have (including, amazingly, the back problem due to nutritional deficiencies). While I know I can't rule out MS still, I would much rather have to be on a special diet the rest of my life than to have MS.

Thanks so much for this forum and any advice you can offer.

Susan

[Long2Play]

Susan,

Welcome to the board. Here is my two cents worth. YMMV......

I would get tested both via the Gluten Blood panel and I would at the same time do Enterolab's tests. That way you have a baseline on both tests. Celiac can act like MS something fierce. I went through Neurological testing as well and my Neurologist said he gets patients who are MS diagnosed but not responding to MS treatment. He tests them for Celiac, finds out they have that instead and takes them off the MS drugs.

The first Gastro doc I went to did an endoscopy and did not find anything either. He said it was all in my head. I was later diagnosed Celiac by my Primary Doc and confirmed via endoscopy from another Gastro doc.

If you are positive on Celiac. I would get tested for nutrient deficiencies immediately. Celiac disease will make you malnourished no matter how clean your current diet is. I have severe mineral and vitamin shortages that I am trying to recover from, that did not get checked right off the bat. They can wreck havoc on ALL body systems.

I hope you find out what is going on and wish you health, peace and happiness.


_________________
"When you come to a fork in the road, take it." - YOGI BERRA

[aklap]

Hi Susan,

Welcome to the board! Sorry you're having problems. I certainly would try to get the bloodwork done. However, you might find the docs won't do the Celiac Panel. Usually the panel is done 1st, then if the blood work is positive, they'll do a scope. The docs might say "You don't have villi damage so it's pointless to do the blood work". However, there are a couple of test in the CD Panel, that might give you a clue about Gluten Sensitivity. See Our Thread on Celiac Blood Tests & More Diagnostic Info.

Most docs will pooh-pooh the gluten sensitivity because A) they know nothing about it or B) it's not CD so it doesn't exist. Refer back to Item A.

Also checkout Our Thread on Dr. Scot Lewey Articles - Very interesting info from a Gastro Doc that is gluten & dairy sensitive [not Celiac]. Definitely worth reading!

I know one person in particular that was DX'ed with MS, she has since gone GF, and followup testing has shown that her MS has "blown it's self out". Hmmmmm....makes ya wonder.....

Like Long said, see if you can get your Vit. levels checked. Particularly B-12!!! This is important. You talked about all your MS symptoms and vision problems - all very common with low B12. Again...something most docs don't know about.

I would also look in to the EnteroLab tests Long talked about. It's a stool test that looks for Gluten Sensitivity [not CD]. Dr. Fine is on the cutting edge and has not been fully accepted by his peers - yet. However several Docs in the know, do give validity to his works. Dr Fine's Essays.


The Gluten File is listed in the Complete CD Blood Panel post, but I wanted to make sure you took a look there too.

Good luck in your Knowledge Quest!! Please keep us updated! Remember, if testing leads to dead ends, you can always do a gluten free trial and see how it goes. You don't want to go GF before you do more testing. You've already had part 1 done [the scope].

Take care!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Long2Play]

I would also like add to what Al said about Vitamin B-12, the importance of Vitamin D. My Perphial issues have come WAY down by supplementing both B-12 and D. Vitamin A is in play as well. I also have some severe mineral shortages. Removing Splenda from my diet also had a profound effect on me. Some artificial sweetners act like a neurotoxin in some of us. Find a Naturopathic or nutrition oriented Doc to help with those issues.

Dr. Fine and Dr. Lewey's articles have started me questioning a ton about what the medical profession really knows about Celiac Disease and it's complications. Both sources have proven themselves invaluable and it is because of Al that I know about them!

I was scoped first before the blood tests and it was missed!! Force your Dr. to do the complete Celiac Panel.

You da man, Al! Get better soon Susan!
_________________
"When you come to a fork in the road, take it." - YOGI BERRA

[suzyq2463]

Thanks so much for all this great advice.

I went to my General Practitioner today to request that a Celiac panel be done. Talk about ignorance. I told him I wanted a celiac panel and he said, "I don't know what that is." I said, "You know, blood tests to check for Celiac disease?" "Oh. I didn't know there were blood tests to check for that. Why do you want this again?" he asked.

Good grief! I had read on these forums that getting cooperation was a bit difficult, but I guess I didn't realize how totally ignorant some doctors are. Of course, I live in a relatively small West Texas city that isn't exactly known for great medical care, but. . . .

After talking for about fifteen minutes, my doc finally relented and agreed to test for B-12 deficiency and run a Celiac panel. "But I honestly don't know how to interpret the results," he said. I said, "Well, surely I can find out what the perimeters are and determine whether I'm in the normal range or not." "Oh, well, the blood test report will indicate what's normal," he replied. (Um, so, how is that difficult to interpret? I realize it's probably more complicated than that, but still).

Anyway, I'm not coming away from this real confident that I'm going to get clear results. I actually had to give my doctor the list of tests that need to be run in the panel (given so nicely by Al). Then, since he didn't write any of them down, I had to show the lab tech which ones she needed to run.

Gosh, now why was it that I paid them money for all this??? I think I'll get a copy of the lab report and just ask all you guys what it means!

Meanwhile, I'll keep Dr. Fine's lab in mind.

And me thinks I'll seek out a new doc.

Thanks again,

Susan

[ostrich]

The good news is the lab results really should indicate what's normal or not. For example, they might say "your X > 100, normal <50". If not you're more than welcome to post the results and we'll help you out.

If it makes you feel any better my doc thought a Celiac test was a breath test! I need to find out if I have CD, not if I'm drunk. Good luck finding a doc with knowledge about CD. There's not many of them out there. My doc was at least supportive of the diet, even if she didn't understand all the details.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[aklap]

Susan,

What you are experiencing is "normal" - sad to say. You doc is a bit further behind than most Sorry. I am glad you took the list of tests to appt. with you. I am surprised that he/she was so willing to do the tests. After messing around for 1 year with reflux/stomach issues I demanded to be sent on to a gastro. That wasn't much help either as it turns out. I had to beg and beg and beg to get a B12 test done. The results came back as "normal" [496]. After researching, I found out that optimal B12 levels are in the 800 - 1000+ range. So I started B12 supps.

Interpreting results. Generally the labs will put a reference range on tests. Normal = a to b High = c to d Low = e to f.

My experience with this really opened my eyes. I had not had to see a doc that much in my [then] 39 years. I was on HBP meds, an occasional gout attack, but generally pretty healthy. After 1.5 years of tests and 4 docs later [none of them giving me the answers], my opinions have changed greatly. If you want the full blown version, check out Our Path's to Gluten Free-dom Thread.


If you doc is open to accepting info, you might look thru Our Thread on Info aimed at Medical Professionals. There's lots of good info there!!

Let us know the results of your tests!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[RD/LD]

Susan,

I must say the knowledge and advice on this support forum is the best you're going to find in my experience. I wish you the best of luck in finding a knowledgeable physican, they're out there- and while you're looking encourage your current doctor to learn about Celiacs and gluten intolerance/sensitivity.

Al, and anyone else who's interested in B12 deficiency, I was recently surprised by a Quest diagnostics lab report I received from a client. They're now stating on the report:

[aklap]

Thanks for the B12 Info Deb!! There's a gal named Rose that hangs out at Braintalk. She's done HUGE amounts of research on B12 because it almost killed her! She is still disabled by it's affects.

Here's here website that has some more info:

http://roseannster.googlepages.com/home

A lot of B12 discussion is held on these boards just because of it's connection.

Neurotalk Peripheral Neuropathy board: http://neurotalk.psychcentral.com/forumdisplay.php?f=20

Braintalk's PN board: http://brain.hastypastry.net/forums/forumdisplay.php?f=219
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[RD/LD]

Sorry to get off topic here, but vitamin B12 levels need to be updated just like vitamin D level have recently (unoffically). With ranges reflecting deficient, insufficient, sufficient, and optimal levels.

Deficient being under 300-400 PG/ML
insufficient 400-500
sufficient 500-700-800
and optimal 800+

Just my opinion, but even a "please note" to doctors on lab reports is a start, which means ranges are being reconsidered for future changes.

Al, thanks for the links!
_________________
Debra,
RD/LD