Diagnosed?

[bobandlucy]

Hello Everyone

I'm 61 years old, and have always had dicey digestion. Since last March I've had chronic diarrhea. My GP diagnosed me with Celiac middle of Oct. and I quit gluten for 3 weeks based on this test:

I was referred to Gastro, who has ordered endoscopy and colonoscopy, and also ordered back on gluten for 6 weeks prior to procedures.

All other tests, including for vitamins, are normal. I have taken a Centrum multivitamin throughout.

I have lost 30 lbs in 6 months and am miserable. Since going back on gluten my bathroom trips have tripled in frequency and "foulness."

Any insights that might be offered would be appreciated.

 

Bob

[Scott Adams]

A blood test is a positive for celiac disease and it’s unfortunate that you have to wait that long for a biopsy. Making a diagnosis with blood tests alone, combined with symptoms going away when you go gluten-free might also be a possibility in your case, and I’d discuss this with your doctor. Be sure to tell him how bad your symptoms are and don’t spare any details!

[bobandlucy]

Thanks, Scott. How fast would the symptoms go away. In my 3 weeks off gluten they seemed to have lessened, but not disappeared. Certainly since going back on it is worse than ever.

Bob

 

[plumbago]

The two test results you posted are for exposure to gluten in the short term. One seems to have been positive, but not the other. Nevertheless, it does kind of seem like you had improvement on a gluten-free diet. What I wonder, given your symptoms, is if there is not another component, such as SIBO or maybe a colitis. It may be worth investigating. Good that you're getting the colo. And, great that your vitamins were in range! I'm sorry that you have to wait so long for the biopsy / EGD colo.

[bobandlucy]

Thanks, Plumbago.

[plumbago]

9 hours ago, bobandlucy said:

Thanks, Plumbago.

Sure, and to clarify my sentence, "What I wonder, given your symptoms, is if there is not another component," I mean, in addition to celiac disease.

[GFinDC]

Hi Bob,

How much longer will it be before they do the endoscopy?  Sometimes a doctors office will put people on standby in case someone who is scheduled cancels.  Then they call the standby patient list and ask them if they want to come in.  That might shorten the wait for you.

Another thing is the amount of gluten you are eating and when.  You doctor can advise you on that.  But you may only need a single slice of bread once a day to keep the antibodies active enough for testing.  If the doctor agrees, then that might reduce your symptoms some.  Also you can experiment with what time of day is best for you to eat the bread/gluten.  In the morning or evening or midday.  Some people may have a hard time sleeping if they eat it at evening, but others may be fine.

It is a good idea to write down your symptoms each day for the doctor to review.  Some Pepto Bismol may help with symptoms and peppermint tea can help with gas/bloating.

Edited November 7, 2020 by GFinDC

[bobandlucy]

3 hours ago, plumbago said:

Sure, and to clarify my sentence, "What I wonder, given your symptoms, is if there is not another component," I mean, in addition to celiac disease.

Yeah, I'm worried about additional factors. My mother died from colon cancer spread to lungs. But it seems to me that if I had a cancer advanced enough to cause all this there would be more pain and it would show in the blood. . .

I'm not OK with my mortality, and seem unable to change that.

Thanks again, Bob

 

[bobandlucy]

1 hour ago, GFinDC said:

Hi Bob,

How much longer will it be before they do the endoscopy?  Sometimes a doctors office will put people on standby in case someone who is scheduled cancels.  Then they call the standby patient list and ask them if they want to come in.  That might shorten the wait for you.

Another thing is the amount of gluten you are eating and when.  You doctor can advise you on that.  But you may only need a single slice of bread once a day to keep the antibodies active enough for testing.  If the doctor agrees, then that might reduce your symptoms some.  Also you can experiment with what time of day is best for you to eat the bread/gluten.  In the morning or evening or midday.  Some people may have a hard time sleeping if they eat it at evening, but others may be fine.

It is a good idea to write down your symptoms each day for the doctor to review.  Some Pepto Bismol may help with symptoms and peppermint tea can help with gas/bloating.

I'll email the gastro and ask about quantities. . . it's all remote now, with the pandemic. I'll try the peppermint tea and Pepto.

Thanks, Bob

[bobandlucy]

 

On 11/7/2020 at 5:41 AM, GFinDC said:

Hi Bob,

How much longer will it be before they do the endoscopy?  Sometimes a doctors office will put people on standby in case someone who is scheduled cancels.  Then they call the standby patient list and ask them if they want to come in.  That might shorten the wait for you.

Another thing is the amount of gluten you are eating and when.  You doctor can advise you on that.  But you may only need a single slice of bread once a day to keep the antibodies active enough for testing.  If the doctor agrees, then that might reduce your symptoms some.  Also you can experiment with what time of day is best for you to eat the bread/gluten.  In the morning or evening or midday.  Some people may have a hard time sleeping if they eat it at evening, but others may be fine.

It is a good idea to write down your symptoms each day for the doctor to review.  Some Pepto Bismol may help with symptoms and peppermint tea can help with gas/bloating.

Forgot to say that the procedures are 1 month from today. . .

[GFinDC]

The University of Chicago celiac center has a formula for body weight and required gluten in take for a gluten challenge.  I think it works out to a slice or 2 of regular gluten bread per day for a 200 lb. man.  Another option would be to take vital wheat gluten.  Some people like to do a last hurrah and eat their favorite gluten foods for the challenge.

One month can seem like along time when you are having such fun as a gluten challenge though.  I hope they can get you in sooner.

[Laureen]

On 11/6/2020 at 8:43 PM, Scott Adams said:

A blood test is a positive for celiac disease and it’s unfortunate that you have to wait that long for a biopsy. Making a diagnosis with blood tests alone, combined with symptoms going away when you go gluten-free might also be a possibility in your case, and I’d discuss this with your doctor. Be sure to tell him how bad your symptoms are and don’t spare any details!

You give good advice.  My symptoms were similar before I was diagnosed with Hyperthyroidism and Celiac disease.  A blood test determined both diseases and now I am much better and adapting to a new way of life.  

[bobandlucy]

Another test has come back and appears normal:

Component                         Your value       Standard range

ALKALINE PHOSPHATASE    82 U/L        37 - 117 U/L

I read that celiac would cause a low value.

ALT was taken previously and also appears normal:

Component                             Your value     Standard range

ALT                                          17 U/L           0 - 47 U/L

So, thus far the only test pointing to celiac is this one (posted previously), with which the GP made the initial Celiac diagnosis:

It could be that the celiac has not damaged the liver yet.

I was initially relieved with the diagnosis, and was ready to jump into the new lifestyle, but now I'm not so sure. . .

I did not mention that over the last many years, one of my hobbies has been "artisan" bread baking. After GP diagnosis, I gave away all my equipment, ingredients, and books, as I was told to give up gluten. I hope that was not premature, and it seems likely that I have a strong intolerance if not the actual disease.

I'm trying like heck to eat more calories, but it is hard to do when feeling bad.

I can see all my ribs now, and am searching for a bed that might be more comfortable. It's getting cold now, and affecting me more than in past years, so I am also buying wool clothing items, which I enjoy.

Sorry to go on like this

 Bob

 

 

[plumbago]

Something is definitely going on, and that's why it's good you're getting both the EGD and the colonoscopy. Your liver enzymes are normal, a good thing. Before diagnosis, my alkaline phosphatase (ALK) would sometimes come back low, which is consistent with celiac disease, I've learned. (All liver enzymes have since normalized for me.) It's interesting that your doc did not run a full celiac panel, perhaps you could ask him/her to do so. I completely understand about wanting a definitive diagnosis, it certainly makes things more clear for me. While I can't say what's going on, it does seem that from what you've said so far, you are having some sort of bad reaction from and effects of eating gluten, so it's probably a good thing you've given up gluten and all related paraphernalia.

[bobandlucy]

35 minutes ago, plumbago said:

Something is definitely going on, and that's why it's good you're getting both the EGD and the colonoscopy. Your liver enzymes are normal, a good thing. Before diagnosis, my alkaline phosphatase (ALK) would sometimes come back low, which is consistent with celiac disease, I've learned. (All liver enzymes have since normalized for me.) It's interesting that your doc did not run a full celiac panel, perhaps you could ask him/her to do so. I completely understand about wanting a definitive diagnosis, it certainly makes things more clear for me. While I can't say what's going on, it does seem that from what you've said so far, you are having some sort of bad reaction from and effects of eating gluten, so it's probably a good thing you've given up gluten and all related paraphernalia.

Thanks for replying. I am back on gluten until the procedures. . .

What makes up a full celiac panel?

[Scott Adams]

Here is the standard panel:

 

[Threecents]

On 11/6/2020 at 7:59 PM, bobandlucy said:

Hello Everyone

I'm 61 years old, and have always had dicey digestion. Since last March I've had chronic diarrhea. My GP diagnosed me with Celiac middle of Oct. and I quit gluten for 3 weeks based on this test:

I was referred to Gastro, who has ordered endoscopy and colonoscopy, and also ordered back on gluten for 6 weeks prior to procedures.

All other tests, including for vitamins, are normal. I have taken a Centrum multivitamin throughout.

I have lost 30 lbs in 6 months and am miserable. Since going back on gluten my bathroom trips have tripled in frequency and "foulness."

Any insights that might be offered would be appreciated.

 

Bob

I agree with Scott that you should have told your doctor right away that the high gluten diet made you sicker. Your doctor would probably advise you to immediately go back to gluten-free. You may need a lot of time gluten-free for your intestines to heal and function normally. An endoscopy will show how bad the damage is and whether it was caused by gluten.

[bobandlucy]

Hello!

I finished the "challenge" and had the endoscopy/colonoscopy last Monday. I left the hospital with a paper indicating the findings, which, for the endoscopy, read "possible Celiac disease." Instructions to resume gluten-free diet and await biopsy results. Unfortunately, I had dropped this paperwork in the car of my ride, and I saw it for the first time today. . . I thought it was odd that I was sent away without at least aftercare instructions! I was pretty out of it, though.

Do you think this means that the doc saw damage consistent with Celiac? Or nothing at all?

Thanks, Bob

 

[Scott Adams]

It definitely sounds like they were able to visually see damage consistent with celiac disease, and you should be 100% gluten-free now. I suspect it will take a bit of time to view the samples and issue the definitive diagnosis, but it sounds like you should heed their findings and give up gluten until you hear otherwise.

Yes, I'm amazed that after decades of being involved with this how poorly labs/doctors and our health care systems still handle this diagnosis!

[bobandlucy]

24 minutes ago, Scott Adams said:

It definitely sounds like they were able to visually see damage consistent with celiac disease, and you should be 100% gluten-free now. I suspect it will take a bit of time to view the samples and issue the definitive diagnosis, but it sounds like you should heed their findings and give up gluten until you hear otherwise.

Yes, I'm amazed that after decades of being involved with this how poorly labs/doctors and our health care systems still handle this diagnosis!

Thanks, Scott. The handout indicated 3 weeks for biopsy results. As an aside, I had a very dramatic improvement for 2-3 days after the colonoscopy (no polyps!), which leads me think that there may be some celiac-associated SIBO. The improvement is now dissipating.

Bob

[Scott Adams]

About a month ago I started taking Bifidobacterium Infantis supplements because of the studies I've seen on them. I haven't had any serious symptoms, but just some minor gut discomfort that seemed to be increasing lately. After about a month on them I do notice a positive difference, and the bloating feelings I was getting have gone away. Here are some articles on this:

https://www.celiac.com/search/?&q=Bifidobacterium&type=cms_records2&search_and_or=and

[bobandlucy]

14 hours ago, Scott Adams said:

About a month ago I started taking Bifidobacterium Infantis supplements because of the studies I've seen on them. I haven't had any serious symptoms, but just some minor gut discomfort that seemed to be increasing lately. After about a month on them I do notice a positive difference, and the bloating feelings I was getting have gone away. Here are some articles on this:

https://www.celiac.com/search/?&q=Bifidobacterium&type=cms_records2&search_and_or=and

Thanks again Scott

I did start taking a probiotic, Theralac, after the procedures. Ingredients are:

Lactobacillus acidophilus 
10 billion CFU (Strain LA-1)

Lactobacillus paracasei 
5 billion CFU (Strain LPC-37)

Lactobacillus rhamnosus 
2 billion CFU (Strain LR-32)

Bifidobacterium lactis 
10 billion CFU (Strain BL-04)

Bifidobacterium lactis 
3 billion CFU (Strain Bi-07)

 

[Threecents]

On 12/14/2020 at 2:53 PM, bobandlucy said:

Hello!

I finished the "challenge" and had the endoscopy/colonoscopy last Monday. I left the hospital with a paper indicating the findings, which, for the endoscopy, read "possible Celiac disease." Instructions to resume gluten-free diet and await biopsy results. Unfortunately, I had dropped this paperwork in the car of my ride, and I saw it for the first time today. . . I thought it was odd that I was sent away without at least aftercare instructions! I was pretty out of it, though.

Do you think this means that the doc saw damage consistent with Celiac? Or nothing at all?

Thanks, Bob

 

My gastroenterologist routinely requires someone come with endoscopy patients to help receive the aftercare instructions and drive the patient home, but he did not give me the Celiac diagnosis until days later in a phone message after the biopsy.  I had no idea what Celiac was until I googled it after receiving my doctor's phone message. I called him the next day and was devastated when he said I couldn't eat wheat ever again. My only symptom at the time was anemia, so the endoscopy was mainly to look for bleeding. I didn't start being super-sensitive to gluten until After I had gone gluten-free.

[bobandlucy]

Well, I've reached the end of this diagnostic road. Gastro says that he believes he saw damage consistent with Celiac disease, but the biopsies did not, possibly not taken in the precise locations. Instructions to go gluten free "for now," based on my symptoms and serology, and his visual observations and that I would be contacted by a nutritionist. I have asked him if Celiac would remain in my "ongoing conditions" file and am awaiting a response.

I don't care to be identified by future Dr.s as someone desiring to be "special" by claiming I need to be/stay gluten-free, but I guess there's nothing I can do about that at this time. I can see that a definitive diagnosis can be hard to obtain sometimes.

I will be around this site reading about coping with the new lifestyle. . .

On the plus side, My colon has no abnormalities!

Bob