Newly Diagnosed-Not Happy

[Sher1]

Hello,

My 22 year old son has recently been diagnosed with Celiac disease (biopsy) I am not accepting this very easily. As his mother (and cook) it is a pain in the butt and a lot of stress.

We realized something was wrong after he returned from a vacation in Thailand (of 3 months) and he kept losing more and more weight. After a series of tests, he was diagnosed with Celiac disease.

My question is- I have heard of others that have had similar stories. What do people think of the idea that something else (not discovered yet) might be causing (bringing on) this condition. My first thought was Tropical Sprue- but apparently his is not that.

Another strange coincidence is, my son said that basically the whole time he was there he consumed very little gluten, so I'm also wondering if that created an intolerance to it.

Thanks for reading- I appreciate any thoughts.

[psawyer]

Welcome to the board.

If you have a biopsy-confirmed diagnosis of celiac disease, it is all but certain to be correct. False negatives abound, but false positives are extremely rare.

Celiac disease has a genetic component, but not everyone with the "right" genes will become a celiac. Something has to trigger the activation of the condition. Infections are common triggers. Others include surgery, childbirth, and physical or emotional stress. Once triggered, the condition is life-long.

For me, my diagnosis was met with mixed feelings. The idea of giving up on so many things that I routinely ate was daunting. But the joy of finally knowing why I was so sick was huge, too.

At first, it seems overwhelming, and the challenges are significant. But there are lots of us here who have been down this road, and can help you.

[sandsurfgirl]

There is no false positive on a biopsy. If he has tested positive then it's positive. Many people on here have family members who doubt their diagnosis of celiac and it makes it very hard for them to lead an already complicated lifestyle. I'm glad you came on here to ask, and that you want to support him as best you can. It's hard for you to cook for him, but he is going through a lot right now and he is the one who has to live with this disease for the rest of his life. His life is very hard right now because when we find out how much we are going to lose from this diease it's a grieving process.

He has celiac disease and a this point the only treatment is diet. It's a complicated pain in the behind as you are finding out, but he must do it. Being an autoimmune disorder, gluten ingestion causes destruction of his intestines. There is no cheating on the diet because even if symptoms don't present right away the damage is being done.

Support him as best you can, and please don't doubt his diagnosis. When I was much younger, I was steered away from a celiac diagnosis because the lifestyle is so difficult. Many years of illness and suffering, two horrific pregnancies, and many trips to the ER with all sorts of other diagnoses later, I found out I have celiac at age 40. You can imagine the bitterness and anger I have processed over that. I am so angry at those who doubted I had celiac and steered me away from even testing for it.

Just support him as best you can and learn together. It's not easy but it's manageable and being healthy is so worth it.

[jerseyangel]

Hello,

My 22 year old son has recently been diagnosed with Celiac disease (biopsy) I am not accepting this very easily. As his mother (and cook) it is a pain in the butt and a lot of stress.

We realized something was wrong after he returned from a vacation in Thailand (of 3 months) and he kept losing more and more weight. After a series of tests, he was diagnosed with Celiac disease.

My question is- I have heard of others that have had similar stories. What do people think of the idea that something else (not discovered yet) might be causing (bringing on) this condition. My first thought was Tropical Sprue- but apparently his is not that.

Another strange coincidence is, my son said that basically the whole time he was there he consumed very little gluten, so I'm also wondering if that created an intolerance to it.

Thanks for reading- I appreciate any thoughts.

There are other causes of injured/flattened villi but they are more rare. They would include:

Cows Milk Protein Intolerance

Soy Protein Intolerance

Refractory Sprue

Collagenous Sprue

Immunodefiency Synodromes

Mediterranean lymphoma

Intestinal ulceration

Gastroenteritis

Intractable Diarrhoea of Infancy

Protein Calorie Malnutrition

Kwashiorkor

Tropical Sprue

Parasitic Disease:

* Giardiasis

* Strongyloidiasis

* Coccidiosis

* Intestinal Capillariasis

* Hookworm Disease

Eosinophilic Gastroenteritis

Contaminated bowel Syndrome

Drug and Radiation Damage

Assuming Celiac, it might be that he was away from home and not eating much in the way of gluten, and when he returned and resumed eating it in greater quantities, he was reacting to it similar to a person on a gluten challenge. Many Celiacs find they are more sensitive to gluten once they are gluten-free.

[Sher1]

Thankyou for all the replies.

Patti, (or anyone)

On the topic of "other causes of flattened villi". Would it be safe to assume that if he goes on the gluten free diet and his symptoms disappear, that I can be sure that it is Celiac and not something else.

[sandsurfgirl]

Thankyou for all the replies.

Patti, (or anyone)

On the topic of "other causes of flattened villi". Would it be safe to assume that if he goes on the gluten free diet and his symptoms disappear, that I can be sure that it is Celiac and not something else.

It's so darn complicated and frustrating. You might want to search on here about withdrawals because many people will have a period of it where they still feel sick or even feel worse for a bit. I did and then it started getting much better after about week 5. Some of us have our digestive systems so messed up that they are pretty sensitive and need to be babied with a simple diet for awhile until things get right in there. There are long threads about it you can find on the forum search.

You're a good mom! And I don't blame you for not wanting it to be celiac. None of us want it.

If he gets better being gluten free (and make sure there is no hidden gluten in his diet), then yes it will be confirmation for you. If you don't have celiac or gluten intolerance then gluten won't be making you sick.

[DonaldandAlanda Evans]

I wish my mom cooked for me when I was 22.......im 27 and I can't even get my wife to cook for me.

[jerseyangel]

Patti, (or anyone)

On the topic of "other causes of flattened villi". Would it be safe to assume that if he goes on the gluten free diet and his symptoms disappear, that I can be sure that it is Celiac and not something else.

Because symptom improvement on the gluten-free diet is a valid diagnostic tool in and of itself, I would say that, coupled with the positive testing, that yes-- it would be safe to assume.

[Sher1]

I wish my mom cooked for me when I was 22.......im 27 and I can't even get my wife to cook for me.

Very observant! I think that's part of my resistance.

[tarnalberry]

The cooking will get easier. Honestly, it's made me a more creative and inventive cook. Though I'm the only one who needs to, my husband eats gluten free with me (outside of his own little corner of bread and cereal). The transition is harder than where you end up.

[ciavyn]

Sher1 -- just a thought, as I'm reading between the lines of your last post. Maybe you should teach HIM to cook for himself, especially now that he's diagnosed celiac. You are doing him no favors if you do all the cooking, as when he moves out, he won't know how to fend for himself, and with celiac, you have to. I cooked, but very, very basic stuff before figuring out my issues. Now I cook all the time, and I generally enjoy it.

Maybe learn how to cook this way together, and slowly let him take over. He might be resistant...but then when aren't kids resistant to anything we try to teach them?

[Gemini]

Support him as best you can, and please don't doubt his diagnosis. When I was much younger, I was steered away from a celiac diagnosis because the lifestyle is so difficult. Many years of illness and suffering, two horrific pregnancies, and many trips to the ER with all sorts of other diagnoses later, I found out I have celiac at age 40. You can imagine the bitterness and anger I have processed over that. I am so angry at those who doubted I had celiac and steered me away from even testing for it.

This is the horror show that many Celiacs go through and I honestly feel the lifestyle is a piece of gluten-free cake compared to the years of illness I also suffered. There may be a learning curve for those who do not cook much and know little of the content of the food they eat every day but it's nothing compared to almost dying. I also have been able to duplicate all but 1 of the non-gluten-free foods I used to eat pre-diagnosis so it's never a question of restriction or what I cannot eat. I can eat most of what everyone else eats except that it's gluten-free.

Sher1....please buy and read Dr. Peter Green's newest book called Celiac Disease: The Hidden Epidemic. It's the second version of the same book, with many new tips and information on Celiac Disease. It'll teach you how the disease process works and how to live gluten-free successfully and hopefully, without bitterness. Good luck to you and your son!

[Nightingale8472]

Hello,

My 22 year old son has recently been diagnosed with Celiac disease (biopsy) I am not accepting this very easily. As his mother (and cook) it is a pain in the butt and a lot of stress.

We realized something was wrong after he returned from a vacation in Thailand (of 3 months) and he kept losing more and more weight. After a series of tests, he was diagnosed with Celiac disease.

My question is- I have heard of others that have had similar stories. What do people think of the idea that something else (not discovered yet) might be causing (bringing on) this condition. My first thought was Tropical Sprue- but apparently his is not that.

Another strange coincidence is, my son said that basically the whole time he was there he consumed very little gluten, so I'm also wondering if that created an intolerance to it.

Thanks for reading- I appreciate any thoughts.

If you're really worried that it might be something else and want more confirmation, there are labs that can do genetic testing to see if your son carries the gene for celiac. If he has the gene, you should also be tested for celiac, as you may have "silent celiac" where there are no intestinal symptoms, but damage being done to the intestines all the same, and instead of the usual celiac symptoms, you pop up with cancer or some other problem later on.

Keep in mind that doctors are usually very reluctant to stick a "celiac" label on people, and many of us struggled for years to get a diagnosis, and some of us still don't have one and just know we feel better on the diet. If your doctor has said that your son has celiac, he or she is probably pretty sure.

Honestly, cooking gluten free isn't too hard (heck, if I can learn, anybody can!) when you make pasta, just make the rice or quinoa pasta for everyone. It tastes the same and if you don't tell the rest of the family, they'll probably never know. Meat and veggies are naturally gluten free (just watch your sauces). A good trick is to make the main course gluten free and have a gluten side or bread basket to keep the gluten eaters happy.

Be sure to keep some quick gluten-free snacks and stuff on hand. Thai kitchen makes some great noodle trays and boxes that are gluten free and microwaveable, which are nice for quick gluten-free meals. Trader Joe's also has gluten-free soups and some other items. They'll print out a list for you if you ask. So will Whole Foods. Sprouts labels the stuff right on the shelves. If there's a health food store near you, EnviroKids makes some good cereals that are like ones your son may be familiar with (frosted flakes, crisped rice, peanut butter puffs, etc) that are gluten free.

If you have a smart-phone, check your provider to see if there's an app for gluten free shopping, and if not, Clan Thompson (Open Original Shared Link) makes a great one that can be downloaded for a fee that can tell you quickly whether a product is gluten free.

And yes, it's probably time for your son to get some basic cooking skills. As a celiac, he's going to need them!

[sandsurfgirl]

I find cooking really easy. Eating out is hard. I use rice pasta and other flours for thickening or whatever. I do make my own bread because I'm reacting to the tapioca in the gluten free breads right now. I sure hope that goes away!

[ravenwoodglass]

If you're really worried that it might be something else and want more confirmation, there are labs that can do genetic testing to see if your son carries the gene for celiac. If he has the gene, you should also be tested for celiac, as you may have "silent celiac" where there are no intestinal symptoms, but damage being done to the intestines all the same, and instead of the usual celiac symptoms, you pop up with cancer or some other problem later on.

Keep in mind that doctors are usually very reluctant to stick a "celiac" label on people, and many of us struggled for years to get a diagnosis, and some of us still don't have one and just know we feel better on the diet. If your doctor has said that your son has celiac, he or she is probably pretty sure.

Just a quick note on the gene issue. Many doctors only test for two of the 9 genes associated with celiac disease. If you do a gene test and only DQ2 and DQ8 are looked for then IMHO the gene test is worthless. I am very, very thankful that I wasn't gene tested until 5 years after diagnosis. And I am very angry that my blood and biopsy diagnosed DD had her diagnosis reversed because a doctor only checked for those 2 genes. She is a young adult who was delighted not to have to be gluten free any longer. Guess what, she now attributes all her celiac symptoms to 'stress'. I can only hope at some point she gets a better informed doctor before she develops a serious offshoot disease.