Newly Diagnosed Celiac Daughter, No Symptoms

[rce's mom]

I'm the mom of the 22 year old daughter recently diagnosed with celiac. The strange part of this is that she had an endoscopy done for other reasons (low lung function & GERD); the doc saw her messed up villi, & then she had the blood work done which was positive. The really strange thing is is that she had none of the typical symptoms. We saw a dietician who instructed us on the diet upon the advise of her doctor. Although not 100% yet, she has started on the diet. Our question is: even though she had no symptoms & we weren't even looking for celiac, is the life-long diet truly necessary in this case, or can she go back to her previous way of eating?

In addition, two days ago a 2nd daughter (age 20) had positive bloodwork come back - celiac, too. Again, none of the typical symptoms. No endoscopy is planned. Is that okay? What I mean is, is the blood work enough to confirm her being celiac? Secondly, it will be hard (though not necessarily impossible) for her to maintain a 100% gluten-free diet when she returns to college in the fall, as no refrigerators are allowed in her room. She may be able to use one of a graduate assistant on another floor. We talked with the food services dept. yesterday & as of now there are no dedicated gluten-free-type lines in the cafeteria planned. If she works really hard at it, she may be able to eat gluten-free there, but I'm not completely sure about that, either.

With this information, should daughter #2, as with older sister, go ahead & go gluten-free & do the best she can while @ school? Or, should she wait 2 years until she has graduated? What is the worst that would happen to either of them if they didn't go gluten-free? In other words, do they have an option?

Does anyone have a 'doctor's' website which might be able to answer these questions, too? All advise is appreciated very much.

Thanks & have a blessed day.

[YoloGx]

How very amazing and lucky you are to have such a doctor so on top of things. Yes your daughters should strictly avoid gluten. Even if they haven't noticed symptoms yet its certain to be lurking in the background, getting ready to ruin their immune system.

Damaged villi tends to create leaky gut syndrome, however it can create other symptoms than D or Constipation. It can deleteriously affect one's nervous system including the brain and eyes for instance and often leads to a variety of degenerative and/or auto immune diseases if it is ignored. It can also create skin problems including DH. It is also a leading cause for cancer. Its probably just the youth of your daughters that has protected them so far. Better to catch it early than later!

I suggest you and they peruse the boards to find out what could have happened if ignored...plus there are a number of good books out there on the subject. One I like in particular is called Dangerous Grains.

Bea

[ShayFL]

I so wish I had known when I was their age. What a life I might have had.......

They are adults and they have to make the decision for themselves because it is a lifelong commitment. And does not make life easy socially as well. But if they can see the "bigger" picture, they will know it is worth it to start now.

If there is a local health food store close by, she might be able to get some easy and healthy gluten-free meals there. I would really push for her to get to use that refridgerator. And there are a lot of foods that do not need to be kept cold she can keep on hand. She can also look around for restaurants that might have a gluten-free menu where she can do take out sometimes. And it is more expensive to live this way, so hopefully you can help her out with this. I'd go into debt if I had to if I knew I could keep my daughter from suffering the way I have for so many years.

[ravenwoodglass]

First make sure that you test everyone in the family now. If you and/or their father are positive then test all your brothers, sisters, parents etc. Your DD wasn't asymptomatic, GERD is often present with celiac and I agree with the doctors that with a positive blood on her sister there is no need to put her through and endo.

As to college, my DD's college put her into senior housing her freshman year to accomodate her celiac and also refunded the money for her meal plan. With a positive diagnosis the college will need to accomodate her dietary need if she lives on campus all you have to do is to let them know. I would do it now so that her room is set when she goes in the fall. Because of CC issues my DD was also able to room alone.

The diagnosis is not the end of the world although it does take some getting used to. The diseases and conditions they will avoid by sticking to the diet are obvious if you look at the signatures of those of us who suffered for most of our lives with celiac misdiagnosed as a myriad of other disorders.

You have come to a great place for support and info and feel free to ask any question you need or to vent the frustrations. If you DD's have not paid us a visit here it would help them a lot if they did.

[happygirl]

From: www.celiacdiseasecenter.columbia.edu (Dr. Peter Green is a leading Celiac researcher/physician.)

"Symptomatic, active or classical celiac disease refers to presentations with diarrhea, with or without malabsorption, whereas in asymptomatic or silent celiac disease gastrointestinal symptoms are lacking or not prominent even though extra-intestinal symptoms may be present. The majority of individuals with celiac disease are considered to have the silent form."

"Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis. "

From: www.celiaccentral.org

"Some people with celiac disease may not have symptoms. This is known as asymptomatic celiac disease. The undamaged part of their small intestine is able to absorb enough nutrients to prevent symptoms. However, people without symptoms are still at risk for the complications of celiac disease."

[rce's mom]

Thank you all for writing back & your input. This information is so valuable. The more information & knowledge I have, the better. Have another blessed day.

[Juliebove]

My gastroenterologist said GERD *is* a symptom of celiac.

[Fiddle-Faddle]

My gastroenterologist said GERD *is* a symptom of celiac.

Yes, many of us here have GERD, as well as autoimmune thyroid disease, diabetes, rheumatoid arthritis, and other autoimmune issues that seem to be directly triggered by GLUTEN, even in the absence of "typical" celiac symptoms.

I'm another one who went most of my life with no obvious symptoms (except GERD and Hashimoto's)--and I won't go near gluten, at least, not on purpose. It's not worth it. I've heard too many people on this very board who have developed horrible things like lupus, MS, and I even had a colleague who died of lymphoma who might very well have had celiac (they ran a wheat allergy test on him, not a celiac panel, so we'll never know).