Help Before The Endoscopy

[blondebombshell]

going next week finally for my endoscopy to test for celiacs after a gluten allergy came up in my bloodwork.

if i dont test positive for celiac, is there something else that the endoscopy could 'show?' perhaps if something else is wrong? could the tell from the endoscopy?

thanks again.

here are my symptoms:

- bloating (had a bagel and was SO bloated for over 4 days it was painful)

- constipation (go about 1x a week at the most unless on laxatives)

- fatigue

- moody/depressed at times for no reason

- itchy hives on my legs if i eat breading on chicken, bagel, certain sauces, etc.

thanks so much

[Fiddle-Faddle]

Celiac doesn't mean that you have an allergy. It's an autoimmune disfunction. Did your bloodwork say that you are allergic to wheat, or did you test positive specifically for celiac?

Either way, I'm not entirely sure that an endoscopy is necessary. Bloodwork + dietary response is a pretty firm diagnosis. An endoscopy might be worthwhile if the diet doesn't help,t hough. But if the diet fixes all the problems, why bother with an endoscopy, which is invasive and somewhat risky (anesthesia), not to mention expensive?

I would ask the doctor EXACTLY what is he looking for? If he just wants to confirm bloodwork, than all he is doing is padding his bank account, unless he is an idiot and really doesn't understand the bloodwork. The biopsy is NOT a particularly accurate diagnostic tool, as your villi need to be uniformly damaged in order for them to have a high chance of picking a damaged spot to biopsy (damage is often patchy and not visible to the naked eye.). What are you supposed to do if the biopsy is negative for celiac--go back to eating wheat??

In the meantime, read everything you can on www.celiac.com--lots of good information here!

[WW340]

My GI doc was convinced of a celiac diagnosis based on my "off the charts" blood result. However, he wanted to do both an endoscopy and colonoscopy to make sure there were no other problems since I had been ill for so long. Also, my mother had died of intestinal lymphoma at age 56 and I am 54.

There are a lot of things they can find on endoscopy. The esophagus and stomach will be examined on the way to the small bowel. If your doctor sees anything unusual along the way he will photograph it and may do a biopsy. Lots of things can coexist with celiac disease.

In my case he found that I have a generalized eosinophilic infiltration in the stomach and small intestine. It is not quite high enough to be called eosinophilic gastroenteritis, but it is high enough to be of concern.

Since endoscopy is considered the gold standard in diagnosing celiac disease, your doctor would be judged as not having done his job if he didn't suggest the endoscopy, and he would be opening himself up to a lawsuit.

You always have the right to decline his suggestions.

[ravenwoodglass]

In my case he found that I have a generalized eosinophilic infiltration in the stomach and small intestine. It is not quite high enough to be called eosinophilic gastroenteritis, but it is high enough to be of concern.

Since endoscopy is considered the gold standard in diagnosing celiac disease, your doctor would be judged as not having done his job if he didn't suggest the endoscopy, and he would be opening himself up to a lawsuit.

You always have the right to decline his suggestions.

Of course your doctor let you know that the finding he got was gluten related right? And he let you know that the gluten free diet would resolve this issue, correct?

The endo is rapidly falling out of favor as a method of diagnosing us for sure and for certain. A good GI will tell you that although an endo can positively say that you have celiac it can NOT tell you for sure that you don't. Many GI are now going off of a positve blood panel, and or a response to the diet for certain diagnosis. The endo can miss a lot of us, there are 22 ft of small intestine and the damage can be patchy and easily missed. Also many GI do not know the stages and effects that gluten can have on the digestive tract, which include EE and ulcers, unless we are almost dead from total villi destruction. There are also forms of celiac that have a neurological presentation for years before the villi are effected.

The choice to endo is yours and yours alone. If you do choose to endo please insist that everything they use on you be checked for gluten and insist loudly. As mentioned dietary response is also a valid form of diagnosis and you don't need anyones permission to eat gluten free.

[Fiddle-Faddle]

M

Since endoscopy is considered the gold standard in diagnosing celiac disease, your doctor would be judged as not having done his job if he didn't suggest the endoscopy, and he would be opening himself up to a lawsuit.

You always have the right to decline his suggestions.

I don't believe an endoscopy SHOULD be considered the diagnostic gold standard. It's simply not as accurate as bloodwork and dietary response.

[gfp]

I don't believe an endoscopy SHOULD be considered the diagnostic gold standard. It's simply not as accurate as bloodwork and dietary response.

Worse still it can lead to false negatives that are very hard to then retract!!!

Depending on the knowledge of the GI the danger is a negative biopsy can lead to a diagnosis of 'IBS' or something non specific even when blood tests and dietary response show the opposite.

At best getting a positive biopsy means deliberately damaging an internal organ in a way that might never be fully repaired.

If the biopsy is to look for complications or other things that is a different matter but as a diagnosis for celiac its worse than useless and contradicts the maxim "do no harm" ... I have heard of cases where a biospy has been negative and the patient has then been told to eat more gluten for longer to get a positive result. The only interpretation of this is to ask a patient to deliberately damage themselves in order to fulfill a criteria. Outside of watching House M.D. I can't think of any other doctor who would deliberately harm a patient to make a diagnosis??? Especially when the patient is already responding to the 'cure' which in this case is a gluten-free diet.

[dlp252]

Just adding my experience....

Yes, the endoscope can find other "problems". I originally had mine because I was having a colonoscopy (for blood found in stool). The doctor figured that since I would be out I might as well have the endoscope at the same time so that we could check for intestinal damage. I'd been gluten-free for 5 months already, so I wasn't holding out hope that he'd find anything regarding celiac, but I was having some issues that he wanted to check out.

So, he found damage to my esophagus, a polyp in my stomach and an enlarged ampulla of vater (the opening in the small intestine where the bile and pancreatic ducts meet and empty into the intestine). He wasn't able to reach it for a biopsy, so a week later I had to have another endoscope on better equipment. So, yes, the endoscope can definitely find other things.

In my case the doctor couldn't find any villi damage (not sure how many biopsies he took, but I suspect not many), so he couldn't base his diagnosis on that, but he did say that dietary response was good enough, and I definitely saw some improvement going gluten-free.

You have your bloodwork...that should be good enough for the celiac side of it all, but I wouldn't necessarily rule out the endoscope either...

[blondebombshell]

i am sorry i started such a ruckus!

i am just not understanding what it is that is wrong with me since this all happened out of nowhere! i have always had constipation issues (ever since i was a child) and then began becoming bloated for about 2 years. i always thought it was a pre-menstrual thing but it wasn't.

i went to my 'regular doc' and he said i was constipated, hence the pain on my left side everytime i laid on it and when i was taking laxatives i felt much, much better. then he did bloodwork and it came up that i had a gluten/wheat allergy and when i stopped eating gluten i felt MUCH better.

then when i began eating it after one month then my legs began to break out in itchy hives. my derm had me on antibiotics for my horrid, cystic acne and then i stopped taking the antibiotic b/c the derm wasn't sure if the hives were antibiotic related.

well - i stopped eating things with gluten/wheat in them, my skin cleared up (with NO other prescriptions) and the itchy hives went away. as did my stomach bloating.

i am still however, only going to the bathroom 1x a week.

[dlp252]

i am sorry i started such a ruckus!

Nah, you were fine!

And as far as ruckuses go, this is very mild.

[happygirl]

I would strongly encourage you to get the endoscopy. Too often, we have other things going on that we "blame" on gluten. Its best to know if you have any other issues.

I think its great that you have a doctor that is willing to look for multiple issues. Before your procedure, speak to your doctor and request that he take multiple biopsies in multiple locations to increase the chances of an accurate biopsy reading.

Doctors often refer to Celiac as a gluten allergy either 1. in passing or 2. she may have had an elevated AGA IgA or AGA IgG which can indicate Celiac OR a non-Celiac gluten intolerance (often called allergy or delayed allergy).

[dlp252]

Oh, and in my opinion, in the end it probably doesn't matter whether they tested for a gluten allergy or did the celiac bloodwork, in either case you shouldn't be eating gluten. Some of the blood testing for allergies can give false positives, but since you saw improvement off of gluten, I'm thinking if it was allergy testing, then it was fairly accurate for you.

[Fiddle-Faddle]

It sounds like gluten may well have caused every problem you have mentioned with the exception of only pooping once a week. Everything else resolved after gong gluten-free except for that, right?

Before going through with an endoscopy--which as others have said, is something that would help diagnose other issues--I would want to know if your diet is playing a role (maybe the only role?) in your constipation issues.

For example, are you eating 3-4 servings of fresh fruit, including stone fruit (peaches, pears, plums, etc) every day? Are you eating salads and other vegetables (NOT counting potatoes as vegetables) at both lunch and dinner?

Or are you eating a lot of rice, potatoes, rice-pasta, and gluten-free breads?

I'm not accusing you here--you might be eating a daily diet that would put most of us to shame! I'm just mentioning this because when I was a newbie, I had no clue what a huge amount of starch I was eating every day, nor how constipating that could be.

(There is also the possibility that other food intolerances, including some of the healthy fruits and vegetables I just recommended, might be an issue, too... )

Also, when my youngest was a baby, we found that bananas, applesauce, and sweet potatoes were very constipating for her. That's when we discovered stone fruits!

[blondebombshell]

wow - maybe my diet can be 'improved.'

what are some good fruits and vegetables to eat to help one go to the bathroom? i generally eat a fage yogurt w/honey, a red pepper or salad with or for lunch and i generally eat a veggie with dinner as well.

any suggestions abot be terrific!

and yes - everything else (hives, bloating, etc) clear up when i stopped eating gluten.

[Fiddle-Faddle]

Fresh lettuce provides lots of "roughage" and fiber, as do pretty much any raw vegetable. Celery is especially good. The fruits that help most on that score or "stone fruits" (peaches, plums, apricots, mangoes, and pears--the ones that have stone pits rather than multiple tiny seeds). We also had good luck with strawberries and cherries. Bananas are binding, for some reason. Apples and applesauce are supposed to be good, but in our experience, they were binding, not loosening! I'm not sure about grapes--anyone out there have any experience one way or the other?

My favorite salad is chopped greens (we like red Boston lettuce), with grated carrots, chopped red or green onions, diced celery, diced red pepper, sliced fennel, and home-made ranch dressing, topped with a sprinkle of shredded cheese! This time of year, I like to add craisins and walnuts, too!

Dried apricots are very easy to carry around and nibble on during the day. The only downside is they are pretty high in sugar, so if you are diabetic, that might not be so good, but if you're not, go for it!!! (At least it's not an added sweetener!)

[Judyin Philly]

hi

There is some really good advice here.

I would also like to add to those who would encourage you to get a base line for an endoscopy.

I have a dear friend who was an undx'd celiac for years. about a year ago she was FINALLY dx'd by the endosocpy with lymphoma the GI said it was because she went un dx'd (tho she'd been doctoring for years) one of us who was 'a seeker for answers'. She underwent allot of radiation, chemo and surgery.

They thought she was fine. Last week she learned the lymphoma was back ..............

I fought getting one for 2 years but am glad I finally got the colonoscopy/endo at the same time. Now I have a base line.

What ever route you decide we'll be here to support you

hugs

Judy