How Did This Happen So Quickly?

[anniej55]

I'm hoping someone can shed some light on this. I was feeling fine, just fine. The stress in my life had been gone since January, when I was hired as a school librarian (my chosen profession!) and the pay put an end to my money problems. I love, absolutely LOVE, my new job. I haven't been this happy in at least 3 or 4 years ....

I went for a long over-due check up at end of April. Yes, I did find myself nodding off around 4:00 every day, but chalked it up to turning 50 (soon ... not yet and holding on to "49" !!! ). The check up turned up some liver enzyme problems ... which has turned into a diagnosis of celiacs. It's not the diagnosis that has thrown me, per se, but it's my physical health on the decline that is getting to me. I am sooooooooo tired at different times .... and not to go on about the bm thing, but it is different. Maybe because of the gluten-free diet and more corn (as in corn chips, my safe food?). I don't have tummy aches at all ... but did have them right before celiac was positively diagnosed by blood work, not by biopsy. I was scoffing down wheat thins when I had the stomach problems ... something I'll never taste again.

So how did the celiacs come about? The physical part of it. Why now? I was in a very happy and financially stable place for the first time in a long time. I did have a cold in February .... but I always get that. The one thing that does stand out is a wicked headache in March/April (can't remember exactly when). I thought it was a virus that was going around school; I went to work, took tylenol (only thing available - usually take advil) and was better (not normal, but better) by end of day and was fine the next day.

Any thoughts on this would be appreciated ....

Ann

[Guest jhmom]

Hi Ann and welcome to the board!

There is no rhyme or reason to this disease. I woke up one morning feeling like something was terribly wrong! I was nauseas, couldn't stay out of the bathroom and generally just felt BAD!!! I too have always been a healthy, active person then it hit me like a ton of bricks!!!! I guess something just "clicked" in my brain??!?!?

Now my 9 year old daughter on the other hand has had problems pretty much since birth. She had colic, lived off gas drops, turned a year old and started on whole milk and more tummy troubles. It's been on and off like that her whole life so when she was dx shortly after me I wasn't surprised.

Take care of yourself and I hope the fatigue you are experiencing goes away soon!

[KaitiUSA]

Celiac is underdiagnosed and goes undetected usually for a while. Chances are you have had this for a while and just were never tested for it or had complications. Regular blood tests won't detect celiac so you have to get that panel done(and not many doctors think about this when you come in)

It can be triggered from stress, childbirth, pregnancy, surgery, things such as mono, and so forth. In your case it sounds like it may have been present for a while but are just now finding out.

It's better to find out now then when some other complication arises that could have been prevented

[Guest nini]

welcome to the board. I don't have any answers for you... just hang in there. Be thankful that you got a diagnosis when you did. The food aint so bad either, in fact it's quite good.

[Emme999]

Ann -

Welcome I'm sorry that you have to deal with the stress of finding out about this now - but think of how much healthier you will be able to be when you are putting the right stuff in your body! I just found out a couple of weeks ago, and it was rough for me. But I realized the other day that (since I've probably had this -actively- since I was a little girl) I am about to discover who I am without the fatigue, irritability, depression, and other unhappy side effects that come with celiac disease! So... Yay for us!

This forum is full of incredibly understanding and wise people It has helped me more than any book or website (though I go through other stuff at a pretty rapid pace!)

Here is a little quote from another site talking about celiac disease:

How Does One "Catch" Celiac Disease?

Celiac disease cannot be "caught," but rather the potential for celiac disease may be in the body from birth. Its onset is not confined to a particular age range or gender, although more women are diagnosed than men. It is not known exactly what activates the disease, however three things are required for a person to develop celiac disease:

A genetic disposition: being born with the necessary genes. The Human Leukocyte Antigen (HLA) genes specifically linked to celiac disease are DR3, DQ2 and DQ8.

A trigger: some environmental, emotional or physical event in one

[anniej55]

I guess I am lucky it was diagnosed so quickly ... GI Doc ordered a panel the first and only time I've seen him. And the CAT and a colonoscopy. Seriously - I went in for check up on April 29th and was diagnosed on May 18th. I had the lab results, but must have left them at work.

I guess it may have been present for a while .... does the tiredness go away? I have a one or two good days and then boom - wicked tired again. My doctor is very low key, but she has ordered 50,000 units of Vitamin D 3X a week. Anyone out there know if that means serious trouble down the line? (cause I'm missing it!).

And the food has been good so far ... Pamela's cookies, YUMMO. I tried to get the bagels (starts with K ... cant spell it) at the Whole Food store today, but there weren't any. I bought some George's corn muffins - any good? I need something to have with my coffee in the morning.

If the condition is caught in time, does it negate the possibility of serious complications down the line? I've done my reading, know that gluten-free for 5+ years will bring me within the normal range of getting lymphoma. What about lupus, etc?

I am 99% sure that my college age daughter has it ... and has had it for a while ... but she doesn't want to know. Since she had mono (BINGO - it just clicked) her senior year in high school her health has gone down hill; PCOS, probably Cushings and is sleeping every afternoon .. but can't at night. She's sick of doctors. After this past week (and I realize I'm lucky it was such a short time) I can understand her reluctance.

Thanks again!

Ann

[gf4life]

The Kinnikinnick bagels are good, and their English Muffins are wonderful (and also work great for hamburger buns). I haven't found any of the George's products here in Central California, but I've heard they are good.

God bless,

Mariann

[tarnalberry]

Sometimes, there isn't a really good explanation. We could try saying "oh, a virus finally triggered it" or "the damage may have been going on and it finally caught up" or any of a number of other things, but the fact is, you may never know why you were diagnosed so suddenly. The good news is that it won't stop you from doing the gluten-free diet! :-)

[anniej55]

I was scared silly - or scared gluten-free! My dad died of bowel cancer, his mother of "stomach cancer" (at least 40 years ago .... catch all term back then, I'm sure). The thought of intestinal cancer, lymphoma, whatever knocked me to my knees and had me crazy. If going gluten-free will lower my chances of any of that, then that's what I'll do! I can have potatoes, meat, wine ... so my diet changes. Small price to pay, I figure. Then again, it's only been a few weeks. Let's see how positive I'll be in a few months.

Ann

[princessfuzzball]

I was scared silly - or scared gluten-free! My dad died of bowel cancer, his mother of "stomach cancer" (at least 40 years ago .... catch all term back then, I'm sure).

if you have Celiac's and don't go gluten-free, you increase the risk of those cancers... it's motivation enough for me, I'm young and don't want to have this be a possibility.... Welcome!

[KaitiUSA]

I was scared silly - or scared gluten-free! My dad died of bowel cancer, his mother of "stomach cancer" (at least 40 years ago .... catch all term back then, I'm sure). The thought of intestinal cancer, lymphoma, whatever knocked me to my knees and had me crazy. If going gluten-free will lower my chances of any of that, then that's what I'll do! I can have potatoes, meat, wine ... so my diet changes. Small price to pay, I figure. Then again, it's only been a few weeks. Let's see how positive I'll be in a few months.

Ann

Going gluten free will bring your chances of cancer and those things back to the normal population risk or pretty close to it.

It's when you ignore the diet or "cheat" often that chances of cancer increase by 40-100 times. Other life threatening and disabling diseases will be more likely to get as well.

[anniej55]

Exactly how I felt. My mom just didn't understand ... she tried, but kept asking what would happen if I had something to eat that wasn't gluten-free ... I finally told her about the increase in chances of the cancer and she is on board with the whole diet. I'm only 49 ... I want to be around a lot longer!

And welcome to you, too. I do find that I'm eating better, somewhat. meat and potatoes every night instead of a handful of cookies (hey - I live alone. I never cared much about cooking just for me!). Slow and steady, I guess. Going out to eat will be the challenge. I know Uno's does gluten free ... until they put bread on my plate. My son works there and will tell them that gluten-free means all gluten-free, not just in the food that's prepared. He said it was the prep people and not the chefs that did it. It's ok - mistakes are made. But how do we truly know that there isn't any cross contamination, or is that being to picky when we're out?

[Emme999]

Ann -

You have a great attitude!! I love it!

As for how positive you will be in a few months... well, I'm not sure because I haven't been doing this for a few months yet But, after just a couple of weeks I am already feeling better about things Maybe it's because I am eating healthier - or maybe it's because the fatigue has lifted so much - or maybe it's because I'm finding a lot of tasty things that I *can* eat! But I think (for *me*) I will be even more positive in a few months!

Best of luck to you!!

- Michelle

[cdford]

As you go gluten-free, you may experience a period of time where your body is adjusting. After that, the longer you are gluten-free, the better your will feel and the fewer symptoms you will show on a daily basis. This did not happen suddenly, just the consequences became enough for it to finally be seen for what it is. The good news is that by going gluten-free you will feel better and live longer. It is tough for the first few weeks or months as you adjust to a new way of eating and shopping. Once you get the hang of it you will find that it becomes easier. That muddy-headed fatigue feeling will begin to go away and you will feel more like doing the things you love again. Hang in there!

[anniej55]

Thanks Donna. This is a 3 day weekend for me and I've been sleeping like I was in college .... I made myself get up at 9:00 A.M. yesterday, 7:30 today. I work at a school, so when summer vacation comes I'll allow myself to just sleep until I'm rested.

Right now, I just want this rash to go away. The best reason to be gluten-free - no more itching.

And yes, the first few trips to the grocery store was depressing - so much I couldn't eat. But I'll be fine. If this is the only disease that I get in my lifetime I'll consider myself lucky.

And I can still have my morning coffee! Life is good

Ann

[cdford]

It takes a while, but you will get the hang of it. Once you have sorted through which brands you can buy of which items, your grocery shopping gets much closer to what it used to be...you head to the store with a list and just automatically pick up the brand of an item that you know you can eat. I keep a notebook with me containing the gluten-free lists and any research I have done. Take your cell phone with you to make any calls to verify whether an item is gluten-free. Some chains like Kroger have dieticians available during the day to assist you.

It will take the longest for the Dh spots to completely clear. Even if you get glutened accidentally at some point, they take the longest to reclear. They tend to scar easily and leave a discolored place on the skin once healed, so try your best not to scratch. If you have a dermatologist, they can give you some ointments to help heal them and keep them from getting secondary infections. I also use a Shaklee product called Basic H as a "bubble bath". When I use half a teaspoon in a tub of water, the sores become less red and itchy after a good soak. If the itching is driving you nuts, ask the doc for a Vistaril prescription. Be sure your pharmacist verifies that the brand he dispenses is gluten-free. They should do that on all your meds. Have them flag your file. The only thing about the vistaril, like most antihistamines, is that it can make you sleepy. If you have to drive or use dangerous equipment, don't take it and work.

It won't be too long before you begin to feel more like being active again. The symptoms will settle down and you can get on with life again. You won't regret going gluten-free (well, not 99.9% of the time anyway).

[anniej55]

Hi Donna,

Thanks for the advice. Yesterday was a great day - I actually cleaned, etc, had tons of energy. But it's back to getting up at 6:00 A.M. today and I'm tired. Is this because I did too much yesterday or just because not enough sleep last night?

And I'm having the most trouble with the non-food items. My vitamin C tabs has maltodextrin in it, which I cannot have, right? And I don't know if the vitamin D has anything extra in it ... so I guess I will have to talk to pharmacy.

What about powders? Gold Bond for babies? I use that ... and hydrocortisone? Do I have to worry about that, too?

Thanks for the advice and help. Too early to write much more

ann

[cdford]

Sorry it took me so long to get back to you. My son got married tonight so this week has been really hectic.

When I overdo it, I go through a cycle of either sleeping all the time for a day or two or being so tired I cannot stay asleep and will sometimes stay up for a day or two straight.

The easiest way to check on a product, whether a food or a medical item, is to contact the manufacturer. Usually there is an 800 number on the packaging. Keep a list of all the info you gather so you can have it handy. You can also download gluten-free food and drug lists from various sites and check them.

Yes, you do need to check anything that comes into contact with your body, especially if it might come into contact with your hands or face at any time. Some people have to be more careful than others and you will find out over time how sensitive you are. Be especially careful of lotions, hair products, and makeup since it is easy to get them onto your hands and into your mouth. With shampoos it is easy to get it into your mouth when rinsing or even get the transfer from your hand to your mouth if you eat something later. I am so sensitive that powders of any kind that come into contact with mucous membranes, even by breathing them in as I put them on, will trigger a problem. My daughter is not nearly so sensitive. It just varies from person to person.

Hope this helps. Feel free to message me if you have further questions. I'd be happy to answer them.

[srdover]

In the beginning of your gluten-free life, the fatigue will vary. It was very cyclical for me in the beginning as well, but the longer you are gluten-free and the more time your body (intestinal lining) has time to heal, the more you should find a return of your energy. Just be patient and rest when you need to. Eat what is healthy for you and keep up the positive attitude!

[anniej55]

Hi srdover,

A week ago I was cleaning house (and I HATE to clean). I evidently ate something wrong, because by this past Friday I was tired and on Saturday the bathroom was my best friend. But I'm back to feeling more peppy today. I think it was the vitamins that I took; I went out and bought the recommended Centrum with no reactions. Either that or I share my computer with my assistants and they ate bread products.... so I'm going to have to ask them to make sure they wash their hands after they eat. I had a "welt" on my face, now gone, so I'm thinking it could have been a few things tied in together. I have been religious about what I'm eating ... not that it's been entirely healthy, but it certainly has been gluten-free from the diagnosis.

My biggest concern now is finding out what the hematologist is going to say. I keep trying to tell myself that my labs are skewed because of malabsorption ....

Thanks all!

Ann

[Guest vetnurse]

Things happen for strange reasons, I can't remember exactly when I started to feel bad, but I unfortunately let it go on for about 2 years. My regular physician finally got me to go to a gastro doctor after she ran my regular blood tests and called me with the results, the first question she asked was how much alcohol I drink daily, after I finished laughing (haven't had a drink in 20 plus years), I thought to myself, oh no, I have liver disease. My colonoscopy resulted in the removal of a precancerous polyp, but no change in my bowel problems afterward. My doctor then said I should have a test for Celiac Disease, I humored him and went for the test, and was amazed it was positive. I have been gluten free ever since, that was about 2 months ago (will get biopsy result on wed.). The diet isn't so bad either. My rule of thumb is, if I am not sure what is in it, where it came from or the ingredients aren't specific, I don't eat it. You will find lots of things that you can have and I find I don't miss the gross glutened feeling. I was starting to believe I was losing it, because I couldn't remember just regular things, but now, I am almost as sharp as I was before, the tiredness has gone away completely and my happy go lucky attitude has returned. Hang in there and don't get discouraged, you will feel better soon. Promise Take care of yourself and be well. Susan

[Guest BERNESES]

Hi Annie- Welcome! I'm glad to hear you are feeling a little better. You are lucky (well- you know what I mean) to have a doctor who diagnosed you so quickly. I went through a lot of tests and my GI still doesn't believe I have it. Oh well!

Grocery shopping at first was really overwhelming. All I did was buy it if it said gluten free so I wasn't exactly eating healthy (and I was way too tired to cook) but as time went on (it's been 6 months since I went gluten-free) it got easier and easier. Now, it's almost normal.

I'm still tired but I just ended a crushing semester at school and I'm on anti-depressants (which I've been able to cut down on) and I think since going gluten free I probably need to cut down even more so I'm working on that but every one I've talked to has said rest as much as you need to. We're lucky since we're teachers/ students (I'm both) so we can rest up thi summer.

Welcome to the board- it's an incredibly supportive, warm, understanding place! Beverly

[flagbabyds]

You have the best attitude about this diet I have ever seen on this board the first time they come on. And if you start out like this, it will only get 1,000 times better. The food has improved so much since I was diagnosed. I was a baby and that was 14 yrs. ago or so. The food was hard and crumbly and had no taste.And I was a little kid and hated all of it. BUt having grown up w/ the disease it has gotten better, and the food actually comes in different flavors other than cardboard.

You sound like you are following the diet very well, and you will start to have more better days than bad days soon. And then all your days will be good with the exception of a few mishaps here and there.

This website has lots of great lists that can help you out a lot with the shopping. My dad does the shopping for most of the family and he brings a huge binder with all the gluten-free lists in it, to the grocery store every week.

You are lucky to have been diagnosed w/out having to suffer too much because that is what most of the people on this board have gone through, and you are one of the fortunate ones.

Must go, science final

[anniej55]

Vetnurse,

You said your doctor asked about alcohol consumption? Were your liver enzymes out of whack? And did you have to go see any other doctors? I guess I'm trying to find a good answer as to why I have to go see a hematologist ... other then my blood counts aren't so good.

And Molly ... well, thank you for your compliments. Of course, my daughter may beg to differ with my good attitude about the food. I tend to whimper and tell her how good that peice of bread/sandwich, etc looks. Just teasing her .... I don't know if you'll understand this, but having celiacs is minor compared to other things that are out there. You're young - you don't need to know or worry about those things. Science finals are pressure enough!

Ann

[flagbabyds]

Science finals are pressure enough

It's over!

I know that celiac is so minor compared to all the other disorders that we could have. I was starving to death when I was a baby and they gave me like 5 weeks to live, they had no idea what was wrog w/ me. Hey I am still here! YOu just seem like you have a very trying attitude unlike some people I know who don't really care and think that it is horrible and don't want to try it at all becasue they don't think they can do it.