Endoscopy

[mommy-6]

Hi 

 

I just had labwork come back positive for celiac and am currently waiting for someone to call to schedule my endoscopy. I haven't been feeling well for awhile and things got bad about 6 weeks ago, I have been trying to find out what is wrong with me for the last month. After being repeatedly treated for constipation, a doctor finally ran celiac labs (it only took 4 doctors and copious amounts of lactulose). I'm currently waiting for my appointment with a GI, which is still 2 weeks away.

 

Sooo, my question. If I were to go gluten free now, would it affect the results of an endoscopy right away or would it be ok? I am miserable and can't live like this anymore, waiting for another potential month seems stupid. How important is it to even get an endoscopy?

 

If it makes a difference, my lab results for:

 

Tissue Transglutaminase IgA Ab  =  199.5

Gliadin PEP Screen  =  82.6

 

and celiac disease is in my family

 

TIA

Christina

 

[kareng]

If you want to have the endoscopy and the best chance of it being accurate, you should keep eating gluten.  I would hate for you to be gluten-free for 2 months and have a lot of healing so that the biopsies are negative.  Then some idiot doctor will tell you you don't have Celiac. 

 

Open Original Shared Link

[cyclinglady]

My take? Standard protocol requires that you keep eating gluten until all testing is complete like Karen said. My endo was scheduled seven weeks out, so I took advantage by bidding a fond farewell to all my favorite gluteny foods!

A biopsy will determine the amount of damage and will rule out a few other things like SIBO, ulcers, cane, ulcers, etc.

I know that you feel bad now, but is think you will be happier if you tough it out. But the choice is yours of course.....

[nvsmom]

I too would advise continuing with a regular diet if you are able.  The biopsy requires a patient to be eating 1-2 slices of bread per day (or equivalent) in the 2-4 weeks prior to the biopsy.  If you are sure the biopsy will not be for a month or so, you could probably cut back on the gluten (some biopsy requirements are only 1/2 a slice of bread a day for 4 weeks) and then maybe increase your gluten as the test date approaches.

 

Your tTG IgA is very high.  There can be very little doubt that it is caused by celiac disease. About 5% of positives are false positives but they tend to be weak positives and not many times above the upper normal limit.  False positives can be caused by thyroiditis, crohn's, colitis, chronic liver disease, diabetes, or a serious infection... I highly doubt your high result is caused by any of those health issues, and I mentioned all this because with such a high score, some doctors would not require a biopsy. Biopsies are not perfect and can miss up to 20% of all celiacs.  Your doctor wants it for a diagnostic confirmation, but please know that even if it is negative, you still have celiac disease (over 95% certainty).

 

Make sure the doctor takes at least 6 or more biopsy samples during the endoscopy.  Our intestines has the surface area of a tennis court so it can be easy to miss patchy damage.

 

Best wishes, and welcome to the board.

 

Oh, and you should get your children tested. Celiac has a genetic component.  Make sure the doctors run all the tets as kids tend to get false negatives.  Do the tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA control test, and maybe the AGA IgA and AGA IgG if the DGP tests are unavailable.

[SMRI]

With numbers like that I would skip the endoscopy and just go gluten-free but there are people that don't think you are Celiac without the scope even with sky high numbers like that.  If you were at 11 and 12, ok, but being close to 200, no question you are Celiac.  Having said that, if it matters, it's a good excuse to continue to eat your favorites over Christmas, etc. if that is something you may or may not miss.  If nothing else, prepping to get ready to go gluten-free would be something to start doing between now and then.  Maybe call your dr on Monday and see if you can get your scope moved up or put on a waiting list to get called if someone cancels?

[mommy-6]

Thank you for the responses. I was also thinking the wait for endoscopy would be a good way to say goodbye to some of my favorite foods.... but putting it in perspective has been a challenge as I pity myself over the loss. As sad as that sounds. 

 

So for this test to come out accurate, I need to eat gluten daily until test day? 

[nvsmom]

So for this test to come out accurate, I need to eat gluten daily until test day? 

 

You need to eat gluten in the 2-4 weeks prior to testing.  Many find it easier to not stop and restart because it can be difficult to make yourself sick for a month once you start feeling a bit better.  Unless the endoscopy is many months away, I would keep eating a regular diet.

 

Enjoy a beer and a cinnamon bun for me.... preferably not together.  

[beth01]

Fried Wontons for me please. And a sub sandwich.

[SMRI]

We were just at a Christmas party--they have these amazing sugar cookies there every year...I really wanted one!!  and donuts, I miss donuts! 

[mommy-6]

I'm not a fan of beer... but I had a caramel roll and a sugar cookie.... and pizza... I'm really going to miss real pizza. 

[SMRI]

Pizza is hard...I just posted on the cooking board about a thin crust pizza with Bob's Red Mill that was pretty good though.

[nvsmom]

Yeah, Bob's Red mill mix isn't bad. I add flax to it and extra baking powder and I get a bit of a rise.

[mommy-6]

I was just reading the reviews on Bob's Red Mill Pizza mix the other day... I was apparently worried about pizza, and I don't even eat it that often, lol.

 

 

I'm about ready to give up on my medical team.... Last Thursday, my nurse told me they'd be calling to schedule and endoscopy... well, now its Monday and still nothing. So I called, and my doctor had already ordered a colonoscopy before my labwork came back with celiac and that's set up for the end of the month... so they just reiterated my appt for that. I try to explain to them, that I was supposed to be scheduled for an endoscopy for celiac and she said the colonoscopy will take care of all that.  When I said endoscopy, she sounded like she had no clue what I was talking about.. are they not done in the same department? Anyway, she said she was waiting for some note back from my doctor.... not sure exactly what that's about... and that I should just plan to see the GI on the 18th as scheduled and my colonoscopy on the 31st. So glad they feel the need to drag this out  . 

[nvsmom]

Ugh.  They do sound confused.  And a colonoscopy on New Year's Eve?  Lucky you.  Bleh. 

 

I would pester them if you can (or get new docs). An endoscopy can easily be done at the same time as the colonoscopy. Two birds with one stone, and all that.  Put the bee in their bonnet about taking at LEAST 6 biopsy samples while they are in there, some docs will only take 2 or 4 if they've got other areas to check out (colon).

 

Good luck with them!

[mommy-6]

I sent an email to the doctor to ask what the heck is going on.. hopefully, I will get somewhere.

[ravenwoodglass]

When you see the doctor on the 18th you might want to tell him you want just the endo done for now (unless this is your over 50 advised colonoscopy). Since you had positive blood work IMHO the endo is what he should be doing and it will save you the prep and expense.  

[nvsmom]

Very good point. 

[mommy-6]

I've thought about that... but here's my hang up. I went in originally for colorectal issues (hence the repeated diagnosis of constipation), and I'm not sure that it's Celiac related. I kind of think the doctor had tested me for Celiac to rule it out but really didn't expect it to be positive, the colonoscopy was scheduled to look for colon/rectal inflammation and such for my immediate complaint. I think this doctor also assumed constipation but ran labs just in case, she prescribed 90mL daily lactulose and told me some people need it for life. So I'm kind of torn now.. if I just do the endoscopy, what if there is something else that gets missed. If I have them both scheduled, I have to wait that much longer to go gluten free and see if it helps.

I talked to the nurse last night, Endoscopy didn't realize they were two different orders but she did confirmed that I will need to see the GI doctor on the 18th to see where they want me to go before altering my colonoscopy appt... so if I end up getting both the endoscopy and colonoscopy, my appointment will more than likely be rescheduled and since they were already booking 4 weeks out.... I am betting it will push me back to mid January at the earliest. If I wasn't so uncomfortable, I wouldn't care, but I've been miserable since the week before Halloween and just want to start feeling better. Though I can easily swap out the colonoscopy with the EGD and keep my appointment on the 31st. The 18th feels like an eternity away right now.

 

My grandma was the only family member who has been tested for Celiac other than me now, and she had no symptoms at all aside from anemia... so I really don't know much about symptoms.

 

Oh, and I'm turning 36 in a few weeks, so its not routine colonoscopy 

[SMRI]

Constipation is a very, very common symptom of Celiac.

[cyclinglady]

Here is a link to the University of Chicago's celiac website regarding symptoms:

Open Original Shared Link

You probably have several and do not even know it. You simply just got used to them. Anemia was my main symptom. Two months after my diagnosis, my bones starting breaking.

You have a positive celiac blood panel. Your GI should order an endoscopy easily. Your constipation issues are probably related to celiac disease, but you can have the colonoscopy to rule out other issues. Small intestinal villi become so damaged they can not move food through your tract. Took me three days to digest food. I did not know. I had a BM every day. So, I thought I was normal.

I know you feel bad, but standard protocol for diagnosing celiac disease requires a endoscopy/biopsies.

Oh BTW, some forum members never even had symptoms -- none!

[mommy-6]

I'm not actually constipated, I go regularly, like clockwork actually. The lactulose put my digestive track in serious overdrive and made me feel worse. My problem is I FEEL like I need to go when I actually don't?... weird rectal sensations maybe? Sigmoid colon? It feels like I have a ball on my lower right side and it twitches like a muscle spasm periodically, I can feel it with my hand too not just internally. I don't know, its annoying. Just woke up one day feeling like this and it won't subside. Can that be Celiac? I know I can attribute my tiredness, bloating and frequent nausea over the past several years to celiac, but this feeling is new and driving me bananas.

[cyclinglady]

Who knows? The medical community is still researching celiac disease. They used to think that just little kids had it and some doctors still think that.

Sounds like you should ALSO have a colonoscopy to rule out any secondary issues.

My husband had been gluten free for 12 years when I went in for a routine colonoscopy (hit that big 5-0!). During my GI consult, my doctor told me he suspected celiac disease due to my anemia. I was shocked. I knew that I had Thalassemia (genetic anemia that would keep my hemoglobin just out of range) and that due to menopause I was having 30 day periods. No wonder I was very anemic. He still insisted on testing me and if positive he would "scope both ends."

I was in complete denial. What are the doss that hubby and I both had it? I knew what going gluten free meant. I did not want to go gluten free! Dining out with ease is the thing I miss the most!

Sure enough, I was positive, but barely. Just one of the tests was positive. I knew that I needed a definitive diagnosis in order for me to adhere to the diet. Plus, I needed to know for my kid's sake as well as all my first-degree relatives as no one has ever been diagnosed.

My biopsy revealed a Marsh Stage IIIB. I was shocked!

The good news is that our kid is free from celiac disease so far. Others in my family are benefiting from my firm diagnosis.

It is a choice you must make for yourself. But I really wish more doctors would educate themselves and do proper testing. I did not ask, but I felt that my GI. Must have just been to a GI conference!

[mommy-6]

My cousin married a girl who ended up having celiac, I suppose it was his genes and her genes that gave 2 of their daughters celiac as well. I'm learning its more common than I ever imagined. 

 

I suppose the ball and spasms on my right side may be completely unrelated to GI, but with the way I have been feeling in that area, I don't quickly brush it off. I'm really anxious to get things taken care of.

 

When my grandma was diagnosed, her doctor told her gluten free was temporary and she could add it back after awhile. My grandma already apposed her diagnosis because she felt fine, and with her doctor telling her it was temporary, she cheated a lot. So my mom told me too that gluten free is temporary, I told her otherwise. I agree, the medical world needs to educate on this better.

 

My oldest daughter has type 1 diabetes, so I think she's been tested for Celiac in the past but its been awhile, the kids pediatrician is pretty proactive on Celiac. I had brought my youngest son in for severe constipation when he was younger and the doctor immediately ordered Celiac tests for him too just because we already had autoimmune disorder in our household. I've been trying to convince my mom to get tested, she's suspected Celiac for awhile and now her blood protein levels are dropping under the noraml range... but she "doesn't want to know". 

[SMRI]

Living with Celiac is "easy"--or at least manageable once you get used to it. Living with the other illnesses that result in undiagnosed/treated Celiac can be deadly.  Maybe providing your mom with better info will prompt her to get tested.  I'm pretty sure both my parents were undiagnosed, and both died very young.

[nvsmom]

With a good 300 symptoms associated with celiac disease (see cyclinglady's link) most celiacs have at least one celiac symptom, many normal people do too.    After gong gluten-free (when your testing is done) I am guessing you'll be surprised by a few things that clear up.  

 

For me, I had C my entire life.  I usually went everyday but I TRIED to go a few times a day.  I never seemed to get entirely empty. Sometimes I wouldn't go for a week, and then I would go many times in a day.  It was all constipation though.  It took about 9 months, and thyroid medication, before my C finally normalized.  My other celiac related symptoms (that improved) were migraines, stomach aches, bloating, plantar fasciitis, some fatigue and hair loss, leg muscle spasms and periodic severe arthritis.  Only the stomach aches and blosting were celiac disease typical symptoms but I got those from all food so I never connected it too a specific protein.