Docs Don't Agree, Waiting For Results

[Beth58]

Celiac sure fits, but the GI & surgeon don't agree & my primary suggested something else entirely. I'm waiting for the gene test results.

Have had most if not all symptoms nearly all my life. Tested for nearly everything and to the point I felt like a hypochondriac since I had strong symptoms of other things but no positive test results. Docs just didn't know why.

Rectal bleeding after soon after colonoscopy brought me back to the GI. The bleeding is not from the mild diverticulitis but from hemorrhoids (now under treatment). I asked him about the diarrhea, discomfort and bloating (I look like 4 mos. prego). GI looked at the digestive problems I've had, std blood tests (only some liver #'s were high) and asked if I was Irish. Caught me off guard which I don't like to experience with docs, but yes I am 2nd generation Irish. He pointed his finger at me, seemed self-satisfied and said "that explains it, you have Celiac disease, I'm sure of it" and ordered the gene test (which isn't back yet).

The surgeon for the hemorrhoids said it was a waste to have the gene test done before any exam whatsoever. "You don't have celiac". I suspect it's because I'm overweight and that's all he needs to know. Didn't even ask why they were testing. I have to see him every couple of weeks for treatment.

I'm having dreams galore about digestive issues and know it's so much on my mind and really needs to be resolved. Wanted to start gluten free now but GI said he'd probably do a biopsy & from what I see here I shouldn't start that yet. But....really hard with the diarrhea and bleeding. Oh, and surgeon said take Benefiber and after I asked if it was wheat based - replied very s-l-o-w-l-y, a syllable at a time, that Celiac was gluten enteropathy, Benefiber was fiber, don't worry about that and see you in 2 weeks.

Arg.

[Jenniferxgfx]

I'm a person of size and have been my whole life. I'm positive my size prevented this diagnosis. All my tests were normal, too. I don't understand why docs are so hardheaded about TRYING a (healthy!) diet, you know? Where's the harm?

If you had an endoscopy with biopsies, you can start the diet, since healing can happen quickly once you're gluten free.

I've heard benefiber causes some sensitive folks to react. Be careful.

I really sympathize. For years I've had normal tests but I've been too sick to work. They blamed it all on fibromyalgia, but I kept getting worse and worse. After negative tests (again), I went gluten-free on my own and my gut problems are resolving, along with a ton of other symptoms. (some I've had since childhood and thought were normal!)

[beachbirdie]

Celiac sure fits, but the GI & surgeon don't agree & my primary suggested something else entirely. I'm waiting for the gene test results.

Have had most if not all symptoms nearly all my life. Tested for nearly everything and to the point I felt like a hypochondriac since I had strong symptoms of other things but no positive test results. Docs just didn't know why.

I asked him about the diarrhea, discomfort and bloating (I look like 4 mos. prego). GI looked at the digestive problems I've had, std blood tests (only some liver #'s were high) and asked if I was Irish. Caught me off guard which I don't like to experience with docs, but yes I am 2nd generation Irish. He pointed his finger at me, seemed self-satisfied and said "that explains it, you have Celiac disease, I'm sure of it" and ordered the gene test (which isn't back yet).

Oh, and surgeon said take Benefiber and after I asked if it was wheat based - replied very s-l-o-w-l-y, a syllable at a time, that Celiac was gluten enteropathy, Benefiber was fiber, don't worry about that and see you in 2 weeks.

Arg.

Your GI doc sounds like he is on top of things. The question about Irish? Spot on! High incidence of celiac in northern European types!

Your surgeon doesn't know anything if he thinks he can dismiss the celiac possibility without seeing a biopsy.

They should test you for bacterial overgrowth...maybe a C.diff infection (Clostridium Difficile).

Benefiber is fiber all right. Derived from wheat. Avoid it like the plague. Find yourself a good cellulose fiber. From the Open Original Shared Link about Benefiber:

# Does wheat dextrin contain gluten?

Benefiber Powder, which contains less than 20 ppm of gluten and is therefore considered "gluten-free," based on both the FDA and the Codex Alimentarius Commission's proposed definition of less than 20 ppm. However, people who experience gluten intolerance should not consume any products, including Benefiber, that contain any level of gluten unless otherwise directed by their doctor.

If you have diverticulosis, you really need to stay on top of the fiber. I use a plain cellulose fiber. If you do have bacterial issues, the person who created the specific carbohydrate diet (Elaine Gottschall) says you should not use inulin fiber, which many supplements are.

You might gain some comfort by avoiding sugars and refined carbohydrates, something like the GAPS or Specific Carbohydrate diets.

[Skylark]

Heh. Your surgeon sounds so typical! Don't expect them to diagnose or have any empathy. They are best with anesthetized patients where they don't have to talk.

Your GI on the other hand sounds like a very sharp diagnostician but I am confused as to why he would order the gene test and not the blood test? Have you had a celiac panel? If you go gluten-free before the biopsy you may always wonder if it comes back negative. On the other hand, some folks prefer to try the diet and not worry about a firm diagnosis (like me).

[Beth58]

Weight always seems to be a primary diagnosis tool. I suspected I had a problem with wheat when I tried the Atkins years ago and was feeling much better as a consequence of still not having wheat when adding carbs back in. The weight loss plateaued out quickly and didn't stay off. My youngest daughter, then 10yo and small for her age grew 13" in just a year when I eliminated wheat for all of us. She had reactions to wheat as a baby & I thought she outgrew it, but I knew nothing about Celiac then. She says she'll be doing the gluten free with me if that's what it is.

The endoscopy & biopsy must be what my GI thinks he'll be doing. Fibromyalgia & MS are just 2 of things I've been tested for - and I am 'borderline'.

[Beth58]

My father had bleeding, digestive problems and osteoarthritis. They never did determine why so I wonder if he had the same thing? I wonder how prevalent these problems are in my family - no one talked/talks about digestive problems. That's probably an Irish things too.....

My GI game me some pro-biotics to take. Would the bacterial overgrowth show on CBC blood work? CBC & thyroid were normal. My primary said to use low fiber until my problems clear a bit and introduce foods gradually as I can tolerate them. The GI said that's fine for now. The surgeon said high fiber. What is and where do you get a plain cellulose fiber?

I took myself off dairy a long time ago and just started with yogurt. As a consequence my Vitamin D levels were way low & I have to supplement - which my primary said not to now until the bleeding stops. I rarely have sugar but my GI said artificial sweeteners will bloat and give me gas. He'd rather me have real sugar.

My surgeon is an idiot not a GI.

[Beth58]

I haven't had a celiac panel done. I don't know why he would order only the gene test. He said he may also do a test where he puts a tube down and takes a look. He made it sound to me like that may not be necessary. Could the gene test results be strong enough on their own to diagnose or make him comfortable enough to treat for celiac?

Heh. Your surgeon sounds so typical! Don't expect them to diagnose or have any empathy. They are best with anesthetized patients where they don't have to talk.

Your GI on the other hand sounds like a very sharp diagnostician but I am confused as to why he would order the gene test and not the blood test? Have you had a celiac panel? If you go gluten-free before the biopsy you may always wonder if it comes back negative. On the other hand, some folks prefer to try the diet and not worry about a firm diagnosis (like me).

[beachbirdie]

My father had bleeding, digestive problems and osteoarthritis. They never did determine why so I wonder if he had the same thing? I wonder how prevalent these problems are in my family - no one talked/talks about digestive problems. That's probably an Irish things too.....

My GI game me some pro-biotics to take. Would the bacterial overgrowth show on CBC blood work? CBC & thyroid were normal. My primary said to use low fiber until my problems clear a bit and introduce foods gradually as I can tolerate them. The GI said that's fine for now. The surgeon said high fiber. What is and where do you get a plain cellulose fiber?

I took myself off dairy a long time ago and just started with yogurt. As a consequence my Vitamin D levels were way low & I have to supplement - which my primary said not to now until the bleeding stops. I rarely have sugar but my GI said artificial sweeteners will bloat and give me gas. He'd rather me have real sugar.

My surgeon is an idiot not a GI.

Your GI sounds like a doll! Does the probiotic supplement include Saccharomyces boulardii? That one is supposed to be very good for intestinal issues that have caused inflammation.

Your Vitamin D issue may not be a result of going off dairy. It is very common to be deficient in Vit D when you have celiac or other issues that cause malabsorption from the intestine.

Bacterial overgrowth won't show up in regular bloodwork. The only thing you might see that's off is a higher than usual white cell count. They have to do specific tests for bacteria.

I got my cellulose from (Company Name Removed - They Spammed This Forum and are Banned), you might find it in a nutrition store as well, it is more expensive than citrucel or metamucil-type fiber supplements. If you don't mind the gelatinous goo, metamucil is very effective! Just make sure you find out from your GI doc if he prefers you to use soluble or insoluble fiber. I also liked Heather's acacia fiber from helpforibs.com if you need soluble rather than insoluble. You can also find acacia fiber (provided you're not allergic to it) at some drug stores.

[Skylark]

I haven't had a celiac panel done. I don't know why he would order only the gene test. He said he may also do a test where he puts a tube down and takes a look. He made it sound to me like that may not be necessary. Could the gene test results be strong enough on their own to diagnose or make him comfortable enough to treat for celiac?

I can't tell you what your doctor is thinking. I can tell you how the tests work. Genetic tests assess risk, but 30% of the US population has a "celiac" gene and only 1-2% are celiac. Most of the celiacs in the US have either DQ2 or DQ8. Thing is, there are also a few people without a "celiac" gene who definitely have celiac so the genetics can be misleading.

The blood tests and endoscopy with biopsy (tube down your throat) have other problems. They are unreliable and while a positive result definitely means you have celiac, they come up negative in celiacs about 25-30% of the time. My doctor says it's difficult to get a positive celiac blood test even with a person who obviously feels better off gluten and yours may feel the same. There is no harm in asking for the celiac panel if you're getting blood drawn for genetic testing and your insurance covers it. A positive result will give you some certainty, which is nice when you're facing difficult social situations.

If you have a doctor who is willing to diagnose and treat for celiac/gluten intolerance based on a positive genetic test and response to the diet, that's good news. Just don't think you can't be celiac if the genetic test comes back "negative". Try the diet after all the testing is done no matter what the workup says. You might be pleasantly surprised.

[Beth58]

What a wonderful group of people here! It's so nice to hear from people without any mention of me exaggerating things or blowing up minor issues.

I'd hadn't put 2&2 together about low Vit D. It would also explain the unexplainable (to me anyways) why other things such as magnesium and potassium have been so low in the past even though I was eating healthy. Docs usually assumed I was lying about my diet.

For a number of years, given a choice - I eat rice/corn/potato products instead of wheat. I've limited my obvious daily wheat to 1 slice of rye or whole wheat bread, pita bread or flour tortilla and sometimes if I 'feel good' a hamburger or hot dog bun. My hubby thought I was nuts, and my doc too - but a multi-grain, whole grain, high fiber thin sandwich round started many a bout of severe diarrhea. I haven't been reading ingredient labels for wheat and eliminating those items.

I'm trying to eat more wheat in case of the biopsy - but it's making me miserable! At this point, if my GI says the results are enough to treat as Celiac I'll go along without any other testing with the exception being I'd love to set the surgeon straight back to school.

[Skylark]

Oh, you're eating low gluten. Your GI may be smart enough to know that your serology could come back negative. I'm more and more impressed with this doc.

As for the surgeon, you can't think of them like other doctors. Good surgeons have great concentration, tremendous manual dexterity, and an insanely good understanding of anatomy. They are not so good with bedside manner, which is half the reason they specialized in treating unconscious patients in the first place. You have to be kind to the poor fellow. He's a fish out of water trying to TALK to you.

[Beth58]

OK, if I have to I'll be kind to him

Other than my colonoscopy, I only saw the GI this one time so I'm not sure if the GI is aware of my diet. My primary is and she sent over records but I thought it was only the blood work. I often have foggy brain though - I could have said something about what I normally eat I guess. I know I told him about my problem with the sandwich thins when talking about fiber etc. (he didn't think I was nuts) Oh and he gave me ReZyst IM probiotic.

Oh, you're eating low gluten. Your GI may be smart enough to know that your serology could come back negative. I'm more and more impressed with this doc.

As for the surgeon, you can't think of them like other doctors. Good surgeons have great concentration, tremendous manual dexterity, and an insanely good understanding of anatomy. They are not so good with bedside manner, which is half the reason they specialized in treating unconscious patients in the first place. You have to be kind to the poor fellow. He's a fish out of water trying to TALK to you.