Celiac diagnosis

[Vickey Matteson]

Hi all,

I've been diagnosed Celiac. I don't have symptom's if I eat gluten and the doctor's don't know why. Has anyone heard of this happening?

 I am on a gluten free diet because of the diagnosis but it doesn't make any sense if I don't have symptom's. I was diagnosed when I was 60, I am now 70, so what happened my first 60 ?

Any thoughts?

Thanks, Vickey

[trents]

Welcome to the forum, @Vickey Matteson!

What you describe is actually very common in the celiac community. We call it "silent celiac disease". Silent in the sense of not causing significant discomfort or distress. After diagnosis, many silent celiacs look back and realize they did have some symptoms but they were so minor as to not grab their attention or they were symptoms of a nature that they would not have connected with celiac disease. Given enough time, and as damage to the small bowel villous lining progresses, symptoms will eventually appear.

Who knows how long before your diagnosis the onset of your celiac disease occurred. The time between onset and diagnosis may have been many years or only a few. You were born with the genetic potential for developing celiac disease but that doesn't mean you had it from birth. Almost 40% of the population has the genetic potential to develop celiac disease but only about 1% actually develop it. It takes both the genetic potential and some kind of triggering environmental or health event that turns the genes on, such as a viral infection or frequent antibiotic treatments. 

So, since you say you can eat gluten and not have a reaction and you have no symptoms, how is it that you got diagnosed with celiac disease? What led to that? There must have been some lab work or health issues that prompted your physician to test you for celiac disease. There are over 200 known symptoms associated with celiac disease and most of them have nothing to do with GI distress. Most people (and unfortunately, many physicians) only think of classic GI symptoms when considering celiac disease. What led to your being tested for celiac disease?

[cristiana]

@trents  @Vickey Matteson   Trents makes a very interesting point.  I did not have gastric symptoms initially but about six months before my diagnosis I had very odd liver function test results, iron deficiency and anxiety.  I developed gastric symptoms just prior to my diagnosis - I honestly think that if I hadn't, my doctors would still be wondering what was causing those other issues.

[trents]

@Vickey Matteson, cristiana expanded on the point I was trying to make. The term "symptom" has a broader meaning than just physical discomfort. You may feel fine but if a medical disorder is causing lab values to fall out of norm, such as iron or liver enzymes or vitamin D3 or B12 levels or bone/tooth demineralization or if you have developed a secondary medical disorder that is statistically connected to celiac disease such as diabetes or Hashimoto's thyroid . . . those fall into the category of symptoms as well. Celiacs who fomerly put themselves into the category of "silent" will often look back and realize they did have symptoms all along, but not such as they had expected because they were only look for classic GI symptoms.

[Vickey Matteson]

 

I had a colonoscopy and they went up to the small intestine and saw something. Prior to this I was having episodes of vomiting. It would be months apart and diarrhea would come too but always started with vomiting. Just out of the blue I would be attacked. They don't know what that is from.

[trents]

So, you did have symptoms: vomiting and diarrhea. They are classic symptoms of celiac disease. That must be why they checked you for celiac disease. A colonoscopy cannot be used to diagnose celiac disease. The scope can't reach up into the small bowel from the lower end. The kind of scoping they do to check for celiac disease is called an endoscopy. The go down into the small bowel through the mouth and the stomach. The small bowel starts where the stomach ends. During the endoscopy when checking for celiac disease, they will biopsy the lining of the small bowel and send it off to a lab for microscopic analysis. Celiac disease is an autoimmune disorder in which the ingestion of gluten causes inflammation to the lining of the small bowel. This inflammation wears down the millions of tiny finger-like projections that make up the lining. This lining is where all the nutrition is absorbed from the food we eat. As the lining becomes more and more damaged with time, the efficiency with which it can absorb nutrients becomes more and more impaired, often resulting in other medical conditions that have a nutritional deficiency cause. Osteoporosis would be a classic example but there are many others.

It's important to realize that whether or not consuming gluten makes you feel ill, if you have celiac disease, damage is happing to the lining of your small bowel, however small it might be and however slowly it might be progressing. This is why it is so important for you to take gluten free eating seriously. Believe me, every celiac in the world sympathizes with you in not wanting to have to go there. Not only does it mean giving up many foods you enjoy but it also has a social cost and can even put a ding in your budget if you rely heavily on pre-prepared gluten free foods.

[TrinaP]

Yes, it’s called “silent celiac.” I have two family members who have this. One of which doesn’t eat a gluten free diet because she doesn’t think it does damage if she doesn’t have symptoms. However, I am well aware of the damage she is doing and risks to significant medical complications in the future. She is also pregnant with her second child and I’m fearful of what damage can be done to her pregnancy not following a gluten free diet. Very frustrating for those of us who are celiac and follow a strict diet and very confusing for our family members who don’t understand why one celiac can have gluten and other celiacs can’t. 

[Vickey Matteson]

Hey, it is so tempting, all the time to go back to eating gluten but as you say there are other medical issues it could introduse. I'm 70 years and I keep thinking what could go wrong in the last few years of life? It's hard.

Thanks for your input.

[Karen9084]

I was diagnosed with celiac disease at age 54. I am now 69 and checking about Dulcolax being gluten-free. I came across your post about being 70 and what could go wrong in the last few years of life! I’m sorry but I find that quite sad that in this day and age you find 70 being the last few years of life. My parents are alive and are 92 and 93. I have grandchildren ranging in age from 20 down to 2.5 years old. I plan on being here, alive and healthy for quite some time. I have never once knowingly ingested anything containing gluten. I know the damage it has caused to my body, my intestines. Eating gluten free has come a long way since I was diagnosed. I hope you realize the importance of remaining gluten free for the rest of your life. And I hope you live a long and healthy life. 70 years old today is not nearing the end of my life and I certainly hope not yours either. 

[trents]

Karen9084, Dulcolax makes several different laxative products that work in different ways. Which one are you investigating as to being gluten free?

[TrinaP]

@Vickey Matteson I totally get that. My dad was diagnosed at 78 and he’s a silent celiac. He consumes gluten quite often but I try to give him a break because at that age I might just say “screw it” as well!!! 🤣

[trents]

I had an uncle who was about TinaP's dad's age when he was diagnosed. By then he was a widower and had always been a very social person. Much of his life revolved around lunch meetings with his friends from church several times a week. Very early on after his diagnosis he realized that trying to maintain a gluten-free lifestyle was not going to be compatible with his social life so he pretty much bagged it. He lived about another 10 years after diagnosis and it's hard to say how much his decision affected his health or life span. But I understood and respected his decision. 

[Karen9084]

Thank you, trents. I actually have a prescription that reads Bisacodyl EC and read that it is actually Dulcolax. I’ve been online checking and I believe this does contain gluten. I took one at the start of my prep, another colonoscopy and endoscopy tomorrow but this is the first time I was ever given this medication/Dulcolax to use before the start of prep. Within an hour of the first dose, I was nauseous. I’m supposed to take the second dose as I finish the second half of my prep. I’m not going to take it. I haven’t had a chance yet to actually look up Bisacodyl but this wouldn’t be the first time I have been prescribed medication that contained gluten. The sad thing is, both my doctor and pharmacist know I am celiac and yet we still have to check ingredients on all medications, whether OTC or prescription. 

[trents]

The prescription version of Dulcolax may contain the same active ingredient but I wouldn't assume the non-active ingredients are the same as the over the counter product. I would check with the manufacturer of the prescription version to be sure. But if your procedure is tomorrow and you haven't finished the cleanout, will they go through with it?

[Wheatwacked]

If you have this reaction to a drug, whether it has gluten is moot.  That drug is not for you.  There are many other drugs that work as well.  For example a 10 ounce bottle of Magnesium Citrate.

[Scott Adams]

14 hours ago, Karen9084 said:

Thank you, trents. I actually have a prescription that reads Bisacodyl EC and read that it is actually Dulcolax. I’ve been online checking and I believe this does contain gluten. I took one at the start of my prep, another colonoscopy and endoscopy tomorrow but this is the first time I was ever given this medication/Dulcolax to use before the start of prep. Within an hour of the first dose, I was nauseous. I’m supposed to take the second dose as I finish the second half of my prep. I’m not going to take it. I haven’t had a chance yet to actually look up Bisacodyl but this wouldn’t be the first time I have been prescribed medication that contained gluten. The sad thing is, both my doctor and pharmacist know I am celiac and yet we still have to check ingredients on all medications, whether OTC or prescription. 

You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication:

To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area.

• https://dailymed.nlm.nih.gov/dailymed/