Went To Doctor

[Hydrokube]

I went to the gastroenterologist today and told him my symptoms and family history. When he found out my sister has Crohn's and brother has IBS, he said that if anything he thinks I may have IBS based on symptoms but wants to test me for Crohn's due to my sister and Celiac for my peace of mind. However, he seemed to disregard my non-gastro symptoms of Celiac disease (acne, canker sores, irritability, underweight, fatigue).

He discouraged me from getting the blood test because they give so many false negatives, and instead is doing an endoscopy/colonoscopy on Tuesday.

• Should I push for a blood test too in case the biopsies are false negatives?
  
• I've been gluten-free for two weeks and am going back on gluten for Tuesday, will that affect my biopsy?
  
• Do you think my intestines are too healed to produce a positive even if I'm back on gluten for the next three days?
  

[Lisa]

I went to the gastroenterologist today and told him my symptoms and family history. When he found out my sister has Crohn's and brother has IBS, he said that if anything he thinks I may have IBS based on symptoms but wants to test me for Crohn's due to my sister and Celiac for my peace of mind. However, he seemed to disregard my non-gastro symptoms of Celiac disease (acne, canker sores, irritability, underweight, fatigue).

He discouraged me from getting the blood test because they give so many false negatives, and instead is doing an endoscopy/colonoscopy on Tuesday.

• Should I push for a blood test too in case the biopsies are false negatives?
  
• I've been gluten-free for two weeks and am going back on gluten for Tuesday, will that affect my biopsy?
  
• Do you think my intestines are too healed to produce a positive even if I'm back on gluten for the next three days?
  

Yes, demand a blood test, as first degree relative have a 22% change of developing Celiac. These are the test to have (all of them):

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

If you choose to pursue further testing, you much return asap to a full gluten diet, to insure the optimum accuracy in testing.

Testing for Crohns is not the same test for Celiac Disease. You will need an endoscopy exam with numerous biopsies taken to test for Celiac Disease.

Many people here have been diagnosed with Celiac Disease as a secondary issue to more apparent concerns.

[Hydrokube]

Alright, I will let him know that I want the blood test panel as well after the endo/colo testing is complete, since the test is in 5 days. I'm going to return to gluten until the testing is done, although I'm dreading it. I guess I can think of it as a final farewell party to my old friend gluten (we're going to try the diet regardless of the blood/biopsies to see how we feel after 3 months or so).

Question, if I'm positive for Celiac during the endo, does that mean I have it for sure, or will the blood test be needed for confirmation?

Edit: One more question, is now a good time to test myself for gluten issues by monitoring how I feel after a few crackers or just dive in and have a huge meal?

The doctor said he was going to check for ulcers/stomach issues, then check for Crohns, then take tissue samples for Celiac to test for everything all in one shot.

Thanks for the advice!

[Lisa]

Celiac can be diagnosed by Serologic Celiac Panel, Endoscopy/biopsy and positive dietary response.

The blood panel and endoscopy exam are not as accurate as we would like at the time. Although, a positive result in either one is considered a diagnosis, coupled with a positive dietary results.

An endo can be hit or miss and the blood panel can rule Celiac in, but it cannot rule it out.

You doctor seems to be covering all the bases. Not many of us have been that fortunate.

If I were you, I would dive right in and eat all your gluten favorites. If you do in fact have Celiac, we can point you toward some good gluten free replacements.

And, I am in remiss not to offer you a good Welcome.

[JW88]

Alright, I will let him know that I want the blood test panel as well after the endo/colo testing is complete, since the test is in 5 days. I'm going to return to gluten until the testing is done, although I'm dreading it. I guess I can think of it as a final farewell party to my old friend gluten (we're going to try the diet regardless of the blood/biopsies to see how we feel after 3 months or so).

Question, if I'm positive for Celiac during the endo, does that mean I have it for sure, or will the blood test be needed for confirmation?

Edit: One more question, is now a good time to test myself for gluten issues by monitoring how I feel after a few crackers or just dive in and have a huge meal?

The doctor said he was going to check for ulcers/stomach issues, then check for Crohns, then take tissue samples for Celiac to test for everything all in one shot.

Thanks for the advice!

Everything I've read and seen (and my doctor even told me) says that you need to be back on gluten food for at least a month before getting the endo/colonoscopy to test for Celiac. I know you were only gluten-free for two weeks, but the body could have healed enough to make it a moot point to do the endo/colo right now. I know the worst was over for me within a couple of weeks after going gluten-free. Why torture yourself for no reason? Only to have to go back a few weeks later and double-check?

And might I recommend you check out my thread about Colonoscopy prep in this same forum. Might save yourself some major grief and discomfort.

My advice is to hold off on the endo/colo until you've been FULLY back on gluten for several weeks...if you can tolerate it. I know there's no chance in Hades that I'll ever go back on gluten to get tested for Celiac. Uh-uh, no way! It makes me too sick now, so I guess I'll just never know if I'm Celiac or not. Doesn't matter, coz I'm never gonna eat the stuff again, anyway.

Good luck!

[Hydrokube]

Oh boy, my stomach does not feel well after ordering pizza tonight. I felt like vomiting a few times, but managed to suppress that urge. It's just burning and gassy and bloated, very uncomfortable.

I'm about to start on a book (excuse my horrible writing, just playing around trying to forgot the pain): The Glutening (horror/thriller)

Little did he know as he inhaled slices of pizza one by one that an attempt would be made on his life. His pizza contained a poison so potent it could incapacitate him for hours, possibly kill him if ingested long enough. Crippling stomach pains followed within the hour, his body was starting a revolution against the poison. He had felt this before, but never knew the true name by which it came. Gluten, that evil beast, that arch enemy, that cultivated grass. Oh, it often came calling with seemingly good intentions, but lo and behold its true nature, a hidden enemy, often hiding in other foods. The triad of evil, wheat, barley, and rye were but a fraction of the true power of Gluten, it could hide anywhere, from nuts to beans to asparagus, even in pants. Feeling that familiar urge, he rushed to the bathroom to endure Gluten's torment.

As he finished his business in the bathroom, feeling as though he deserved a trophy for enduring it, he happened to glance down only too see the shape of a smily face. What kind of devilish food was this! It was impossible, he had read of this only in fairy tales, The Glutening. It happened to roughly 1% of people in those dark tales, each of them beset by illness due to The Glutening. It was like a virus, passed down from generation to generation, eating away at their souls.

What was its mission? He may have found out. He stumbled across some old manuscripts in the library, and carefully brushed them off. Glancing through, he noticed a pattern in the images and text. The Gluttening was a method by which wheat, barley, and rye would harvest souls with which to mutate themselves into stronger beings. Their goal: world domination. This madness, this Glutening, had to be stopped.

He knew just the place to start: celiac.com.

[Takala]

:lol:

[Lisa]

The Poolizer Prize for you!!!!!!!!

Welcome aboard!

[nora-n]

I do agree!

Two weeks off gluten will probably not have caused too much healing in the small intestine, in my opinion.

The lab where the endocopy samples are sent should be notified that the patient was two weeks off gluten.

nora

[Hydrokube]

How long does it take to stop feeling horrible after starting on gluten again? I'm ridiculously fatigued, brain fog, stomach ache, gas, and super cranky. I want to get back into my perma-glutened state again so I don't feel AS bad.

[gfb1]

Yes, demand a blood test, as first degree relative have a 22% change of developing Celiac. [snip]

everything else was good advice... but.... (and i don't mean to be a scold),

but this is not so.

there is clearly an increased risk for 1st degree relatives ... and it might be a 20-some-odd% INCREASE in risk.

but, with no other knowledge.... never that high.

[Hydrokube]

I actually read that if a first degree relative has an auto-immune disease that it's 10% chance of you having it. For every first degree relative after that first, it doubles your chance. I highly suspect my brother has it, and my sister has Crohns and possibly Celiac, so that would put me at 20%. That doesn't apply to everyone though.

The data is from 2006 though, so I don't know if things have changed since then.

[GottaSki]

Open Original Shared Link

check out this video from UCSD's Celiac Center. Dr. Harmon explains Celiac Testing very well...he is the second doctor to speak, but the whole video is very helpful to understand Celiac Disease.

Good Luck to you!

[ravenwoodglass]

everything else was good advice... but.... (and i don't mean to be a scold),

but this is not so.

there is clearly an increased risk for 1st degree relatives ... and it might be a 20-some-odd% INCREASE in risk.

but, with no other knowledge.... never that high.

Until there is more diagnosis of the undiagnosed celiacs in this country it is really impossible to say how much of a risk there is. In my particular instance it turned out to be 100% occurance in my immediate family members, my children and even my spouse and there is strong indication that it was present in all my siblings and in my parents. I know we are most likely an extreme example but I personally feel the risk is far above the 20% that is currently considered.

[Hydrokube]

I need more advice! I just finished my endo/colo and Crohns is ruled out, but the doc says I have gastritis and I won't get the Celiac testing results for 3 weeks. Can gastritis be a sign/symptom of Celiac?

P.sS. I'm a little woozy from the meds.

[ravenwoodglass]

I need more advice! I just finished my endo/colo and Crohns is ruled out, but the doc says I have gastritis and I won't get the Celiac testing results for 3 weeks. Can gastritis be a sign/symptom of Celiac?

P.sS. I'm a little woozy from the meds.

Yes gastritis, which is stomach inflammation, can be a result of celiac. For my DD it was her only GI symptom. I was also diagnosed with gastritis after my last scope, in my case it was caused by the prep and my severe adverse reaction to it. The doc gave me a handful of different acid blockers to try but I decided to try Pepto Bismal for the pain. It worked in one dose and I only needed it for a few days.

I am glad to hear the procedures are finished. Now you can give the diet a strict try. You may know the answer by your response to the diet before they get the results back. I hope you are feeling great soon.

[Hydrokube]

Thanks raven, I will definitely be going on the diet now, but another question now is:

Should I take the Nexium, or would you recommend Pepto. I tend to think that since when I was 2 weeks gluten-free prior to the test (then got glutened a lot before the test on doc's orders), my stomach pains went away and that going gluten-free will cure my gastritis. I'm still struggling to figure out exactly what gastritis is and what can be done about it, especially in relation to Celiac, which I'm near 100% I have based on symptom resolution while on gluten-free from before and now the gastritis Dx.

My prep was unpleasant but my stomach didn't hurt overly much during the whole thing. This morning it didn't hurt at all, I was just in the zone from all the not eating.

Any idea on if gluten-free will cure it?

[ravenwoodglass]

Thanks raven, I will definitely be going on the diet now, but another question now is:

Should I take the Nexium, or would you recommend Pepto. I tend to think that since when I was 2 weeks gluten-free prior to the test (then got glutened a lot before the test on doc's orders), my stomach pains went away and that going gluten-free will cure my gastritis. I'm still struggling to figure out exactly what gastritis is and what can be done about it, especially in relation to Celiac, which I'm near 100% I have based on symptom resolution while on gluten-free from before and now the gastritis Dx.

My prep was unpleasant but my stomach didn't hurt overly much during the whole thing. This morning it didn't hurt at all, I was just in the zone from all the not eating.

Any idea on if gluten-free will cure it?

I can only give my own opinion as I am not a doctor but personally I would go with the pepto at first and see if that helps before the script. Since you had a good resolution of symptoms when you did a trial there is a good chance, again IMHO that the gastritis was a result of the challenge.

Gastritis simply means that your stomach is irritated. In medical terminology, if I remember correctly gastritis literally translates to stomach inflammation.

If your not having any stomach pain now you may want to consider not medicating at all or just using the pepto if eating makes your stomach hurt. I had incredible pain with the gastritis and a knawing feeling, my DD's developed into minor ulcers. For both of us this resolved quickly on the diet. I only needed the pepto a couple times after my reaction.

[Hydrokube]

Thanks for the help raven, good advice. I only wish they didn't feed me cookies after the procedure, as I'm sure that didn't help! Also, I was so out of it I asked for seconds! My wife was telling me all of the silly things I was saying, such as staring at the finger clamp for heart rate and saying "you son of a b****" and then saying I bet it could shoot laser beams, and how I could really use a mechanical arm.

I don't remember anything from when they started the procedure to when I got home, but I guess I told the doctor to please not stick anything else up my bum!