Celiac Mom Just Not Feeling Well

[Tasha2004]

Been here before about this but now it's months later.

My 81 yr old Mom has had Celiac for about 17 yrs or more.

She had a bout of tummy trouble for two months this winter, and lost weight.

We suspect she accidentally ingested gluten last Fall, recovered from that, and then she had tummy woes for two months. When she went off a certain blood pressure med, her problem went away.

She has had a colonoscopy, endoscopy and biopsy, blood tests, dopplar abdominal study, abdominal CT scan and MRI. They found a few pancreatic cysts, but are not concerned about them.

She showed healthy intestines, and no other problems at all.

When she had the BP med problem they told her to watch fats and dairy. Now she is afraid to eat those things, even though they said she is fine.

She is panicky over any occasional loose stool.

She complains of a pulling feeling in her abdomen and a clammy feeling all over, and lots of gas problems.

The doctors seem to look at at me, and I look at them and we think she is just fine.

But I dont want to miss anything, or ignore her or hurt her feelings.

Is there any Celiac complication which we could be missing?

Any ideas would be helpful.

[happygirl]

Did she have the full Celiac blood panel re-run?

During the endoscopy, did they take multiple biopsies in multiple locations to look for remaining gluten damage?

Does she eat out at all? Who is preparing her food? How careful is she with her diet?

Has she tried using lactaids to see if lactose is a problem?

Tested for h.pylori? Parasites?

Is she back on the medication? What other medications is she on?

I would worry about loose stools....for the 1.5 years post Celiac that I was 'healthy', the ONLY reason I had problems was if I had ingested gluten. And mine were only occasional---but still serious.

She has symptoms, which is an indicator that something IS going on. I can't tell you what....but please do not discount or discredit her...she has objective measures of symptoms. Just because a test is negative doesn't mean that something else isn't going on. Just because a doctor tells someone they are fine or something isn't a problem for them----they don't always know. How many of us on this board were misdiagnosed for YEARS and it turns out we did have something: Celiac. Point is: they don't always know.

(The reason that I post this is because post-Celiac dx - 1.5 year later - I started developing new/more symptoms. But all my tests were "fine." I it weren't for the support of my family, I would not have found what my problems were, because my numerous, multiple specialists at the highest medical centers told me that my tests were fine and nothing was wrong with me. )

[Tasha2004]

Did she have the full Celiac blood panel re-run?

During the endoscopy, did they take multiple biopsies in multiple locations to look for remaining gluten damage?

Does she eat out at all? Who is preparing her food? How careful is she with her diet?

Has she tried using lactaids to see if lactose is a problem?

Tested for h.pylori? Parasites?

Is she back on the medication? What other medications is she on?>

Blood panel, I dont know. One doctor insisted there would be no gluten in a Celiacs blood test and she ran the wrong test. I dont know what the Gastro ran.

Multiple biopsies, I dont know.

She is not eating out right now, she lives alone and prepares her own food. Her kitchen is definitely gluten free.

Vitamins and supplements could be a culprit.

She uses Lactaid and tablets.

They tested for parasites and hopefully H Pylori. There isnt much they didnt test.

And she is on Lisinopril and one other med for BP.

The diarrhea went away with the other BP pill.

Now she is afraid to even eat lettuce and ground beef and normal foods like that.

What kind of issues did you discover? What kind of other allergies might a Celiac develop if not lactose?

[Jestgar]

Now she is afraid to even eat lettuce and ground beef and normal foods like that.

What kind of issues did you discover? What kind of other allergies might a Celiac develop if not lactose?

Lots, unfortunately.

I would skip the ground beef and lettuce. Try chicken, rice and well cooked veggies. Add back other foods slowly.

[jerseyangel]

Jestgar's advice is good--some of the most common intolerances include: corn, soy, and dairy.

I would take the diet down to fresh meats, veggies (cooked), fruits (not citrus for now), rice, potato, and eggs if you know they're not a problem.

When she's feeling better, add foods one at a time, and see how she does with them. A simple food diary helps greatly with this.

[Tasha2004]

Would you also think there is a need to take or look into taking digestive enzymes?

This is all really tricky. Mom is usually really really on top of things and very active, but has lost weight since the bad BP med and is tired a lot. It's so hard to tell what is a mental thing (aging, lonliness etc) and what might be real.

I managed to get her a phone call with a Gastro on next Tuesday and an appointment in May, but I cant get more help than that right now.

She insists all her test showed no Celiac problems, and did tell me yes the Gastro ran a Celiac blood panel a couple months ago and it was fine and so was the biopsy.

[Jestgar]

Maybe probiotics. But whatever you add, start slowly.

[Tasha2004]

Update: I've managed to get my Mom to start looking over her foods and supplements.

First of all, she noted wheat possibly in Salada Green Tea in the form of malto-dextrin?

Second, she is questioning some things in her other supplements and vitamins. She is questioning Citrical right now--but I dont necessarily see anything in there. Her B vitamin she says is labeled gluten free.........

Also, she says when she feels badly (from whatever it is) she feels kind of clammy and sick.

Is this a possible reaction?

We are discontinuing the tea and will keep checking the other items. This is at least a positive step because it means maybe there is a real reason she has not been feeling tip top for a long time......