Mother Of Newly Diagnosed Celiac

[judycolby]

My 17 year old son has just been diagnosed with having celiac disease (possibly, doing blood work again). Probably the biggest problem is school. He hurts alot of the time, back, stomach, feels nauseous, etc. I don't think it's good for him to be in school when he feels like this and he really resists going when he's feeling bad. His grades will suffer and be on his transcript. This year the school finally wrote up a 504 (?) plan, which basically means he has special needs and will attend when possible is still responsible for the work. All classes not needed for graduation credits were dropped. By next semester he should only have American Government--horray and this teacher understands. He's been gluten free for a week. I think-I found a list of no-no ingredients and have been following it. We have an appointment with the nutritionist at the hospital next week. Hope we find out we've been doing the right thing.

Like I said before, school is the biggest issue, work would be second. Last school year he was sick at least weekly, had a recurring pilonidal cyst andfinally had it surgically removed. Had his gall bladder out in April. I've read that you can have Celiac with no symptoms and then some event will bring on the symptoms, one of those events being surgery. After his gall bladder was removed he felt the best he'd felt in a long time. So he had at least a few weeks to recover some of his grades. He's always been a pretty good student but his grades from last year were BAD. I'd never seen him get a D.

A few weeks after his surgery he started getting sick again but he said this time it felt different. I think that is when he started having signs of Celiac. He'd already had many tests run because I have Crohn's and a lot of his symptoms were like mine. At first I really liked the dr. we were going to with the cyst and gall bladder problems but when he started feeling sick again the dr. just decided he was depressed. He did run some more lab work at my request and one of the things I had asked him about was gluten intolerance. I'd read an article about it and it sounded like Justin. He did test for it but only after teling me all the reasons he couldn't have it. I got a report that said his lab work was fine. We were still seeing this dr. when the school was going to do a 504 and they need medical input for that. I went and talked to the dr. again and once again he told me Justin was just depressed. I told him only when he's sick. So anyway he recomended that Justin have a mental health evaluation. I wasn't oppossed to it because then we could rule it out, not that I thought it was a problem but to prove to others. I also decided to switch drs then. I figured a dr. that didn't believe me or my son wouldn't help us get to the bottom of his problems.

I took all his medical records to the new dr. and he came up with Celiac FROM THE OLD RECORDS! I don't exactly know what they were testing but he told me 11 and below is normal and 17 and above is abnormal. Justin fell at 13. I tend to agree with new dr. if you're not normal you must be abnormal. They are running another blood test and when they drew blood yesterday he happened to be feeling really bad so maybe the bloodwork will be "off" more. The school really wants a firm diagnosis. I know the school counselor is just doing his job but I've come to dread his calls. I can't make him understand that I have no idea when his symptoms will get better. But now that there is a possible diagnosis he seems to think it will be real soon. I thought so too for the first couple of days! Silly me. Actually they're already talking about taking away the 504 for next semester---not a good idea. I'm so tired of dealing with the school. If I (and He) didn't care about what's on his transcript or about being labeled a dropout (we live in a very small town) I'd let him drop out and finish up at The Learning Center.

It's just so hard to see him sick. I will admit when all his problems first started over a year ago there were times I wasn't sure I believed him but he looked so sick I really couldn't argue with it. I even suspected drugs and or alcohol for awhile and kept a real close eye on him. I didn't really believe it but couldn't help wondering. It was also hard because my husband, Justin's father, didn't really ever seem to think he was sick either. So I just ignored that and went with my gut. He finally came around a couple of weeks ago. But is still very uninvolved. And is likely to stay that way, but my daughter (13) has really gotten into reading labels with us.

I really feel like very few people understand what I'm going through and have no idea what it is like to call the school so often and tell them Justin is sick again. Some mornings I really dread waking him up fearing it will be a "bad" day. From how he acts the night beore (quiet and keeps to himself) i can almost gage if he will be feeling good or bad the next morning although sometimes there's no warning and then it really depresses me.

Sorry this is so long, but I'm thinking you guys might understand. Some days I feel like I will go crazy for him and I too. Oh we got the results of his mental health evaluation and no surprise he's perfectly normal except in the health concerns department. Some days I just want to scream and cry but don't want him to feel guilty and he would. So I try to stay cheerful and then go take a walk but can't come back with red eyes. Some days I really wish he and I could just hibernate until he gets to feeling better. But life doesn't work like that and he really wants to graduate with his own class. Thankfully I have an understanding boss because I have missed a LOT of work gong to drs.

Again I'm sorry this is so long.

[Budew]

I'm listening and empathize. Don't worry about the length of the post, it is good to get it out and know that the people listening completely understand your frustrations. I began feeling like your son when I was 17 too. I never got diagnosed until I as 40. I was forced into anti-depressants. They actually make things worse if you take them when it is unecessary. For 20 years the doctors used the excuse that the vomiting was a side effect from the anti depressants. Being labeled mentally ill creates a big insurance problem. Stand your ground on this one. He may be feeling depressed because of the lack of nutrient absorbsion as well as the frustrations of being ill and not believed.

I also totally understand your frustration with the school. I was a teacher for 25 years. In several cases I fought for students from the inside. Do you have a teacher who will help support you? The bottom lne is a 504 costs them money because of personel and a loss of FTE funding. They are looking out for themselves not for your son. I am curious what school district you are dealing with. I would like to read the statutes for your state and policies for your district so I might be able to help you find a way to get them to coninue the 504 until graduation if necessary.

When I was in high school the district actually graduated me a year early to save money. I don't feel I missed out on anythng except the social aspects of school because of it.

The nutritionist should be helpful. But if you still need help with what to avoid, you will get help here.

Hang in there.

[hannahsue01]

Don't worry to much about long posts on here. I've done it myself. People on here are happy to help. It is hard to find a good doctor. I have been to our university hospital as has my daughter with no good answears. I have also gone to Mayo Clinic and only got a diagnosis of depression and IBS (a bunch of bull I have no found). Back in 8th grade (I'm 24) I missed an entire semester of school by the time the year was over. I tried so hard to go to school every day and could barely make it through the morning....mostly then I had really bad headaches and was just so tired). In high school I started throwing up and had cripling stomach cramps on a daily basis....some people thought I was faking and others blew it of as being stressed.....but I wasn't stressed and liked school. Eventually during my last year of high school my school sent me to what they called an alternative school were I did all my classes with just a couple of teachers in one room.....mostly I was allowed to do my work at home and then turn it in....I did graduate and got a diploma. I would see if you doctor could give them some info explaining how hard it can be to deal with the symptoms of celiac. I hope your son starts to feel better soon and good luck with the school.

[mommida]

Uh-oh. You can't start the gluten free diet before all the testing is done! Unless the new doctor will diagnose from the old test results with no endoscopy with biopsy to confirm damaged villi. You could try genetic testing, but it is rare if insurance covers the test and it is not 100% accurate. (Having the gene(s) does not prove you have Celiac.)

There is a statistic that it takes an average of 11 years for a celiac disease diagnoses in the US. If the school wants to get nasty - do some research at your state's department of education. If they all ready had a 504 in place it should be harder to take it away.

Don't put too much faith in the nutritionist. Many people have been disapointed. The nutritionist we were scheduled with called on the phone to cancel the appointment, told us to buy a book, join a support group, and come to this web site.

I'm in a bit of a funk lately so I can't give you the exact statitics but there is a correlation between gallbladder problems and Celiac.. Your son may have had Celiac before the gall bladder surgery.

L.

[Guest nini]

I'm sorry your son is having such a hard time with school... it's really difficult to get through each day when you feel like crap all the time.

Even if the tests don't clearly dx Celiac, after the testing is complete I would still stick to the gluten-free diet anyway and see if it improves his symptoms.

There is also a correlation between Chron's and gluten intolerance/celiac, you may want to try the diet yourself and see if it helps your Chron's symptoms (maybe you can lower or get off meds if you are on any?)

Has he had the genetic testing? Even if that comes up negative he could still have it because they have not yet mapped all the genes that are related to Celiac.

Don't waste your time with the nutritionist. I've found that most nutritionists know far less about the gluten-free diet than the people who are already living with it (Us on this forum and we are free)...

The most important thing right now is getting him well, not worrying about the school, and if the school district can't understand that, too bad. It's not the end of the world to not graduate with his class or to drop out and go to an alternative school after he's well. Sure it may seem like it right now, but the priority should be his health and not school. (that's just my humble opinion)

Sounds like he is at the very least gluten intolerant, and would benefit from the diet. Pursue whatever other testing you wish to pursue, but after that, get him on the diet asap. Other option is you can just stick to the diet and see if it helps... You don't need a Dr.s permission to be gluten-free. As far as what the school requires, like I said before, school isn't the priority right now. It's commendable that he wants to graduate with his class, but it may not be realistic at this point.

[rez]

Your post brought tears to my eyes. We all empathize and understand and can relate. It's a sad, scary state when you feel so alone and no one believes you. Please hang in there. My son went through a lot and he's 8. We saw multiple doctors and finally, believe it or not, found a wonderful doctor who has Celiac himself! We got so frustrated and had doctors running incorrect tests! It was a living nightmare! I went into a slump myself. I let my house go, and everything just seemed like it was caving in. My son is now a new child. We did genetic testing and went off dietary response. Trust me, depression goes along with this. It was so sad to see my baby drifting away into a person we didn't know. He's a bright boy who has loads of friends and he just didn't seem himself. I feel for you that your husband is not cooperating. You need someone to lean on. My husband and I were a team and he was always so supportive. We both knew what we saw, and it wasn't right. Try to find a support group in your area. Please know there is a light at the end of the tunnel. The gluten free diet seems hard at first, but there are tons of gluten free foods out there. Find a pal in the support group whom you can partner with. Another thing to do would be to have the doc run the blood panel on you. Who knows maybe you have Celiac as well. Then you could do it together. Is your son willing to do the diet. My 8 year old wouldn't touch a donut, muffin, bread, etc. for a million dollars. For my son to turn down junk food, it makes me sad to think how much his tummy really hurt, not to mention having constant sores in his mouth. Another great thing to do would be to get Danna Korn's book, Wheat Free Worry Free. Another good book is Dr. Greene, Celiac Disease A Hidden Epidemic, it's not as warm and fuzzy, but it's very factual. Good luck and hang in there!

[judycolby]

I'm listening and empathize. Don't worry about the length of the post, it is good to get it out and know that the people listening completely understand your frustrations. I began feeling like your son when I was 17 too. I never got diagnosed until I as 40. I was forced into anti-depressants. They actually make things worse if you take them when it is unecessary. For 20 years the doctors used the excuse that the vomiting was a side effect from the anti depressants. Being labeled mentally ill creates a big insurance problem. Stand your ground on this one. He may be feeling depressed because of the lack of nutrient absorbsion as well as the frustrations of being ill and not believed.

I also totally understand your frustration with the school. I was a teacher for 25 years. In several cases I fought for students from the inside. Do you have a teacher who will help support you? The bottom lne is a 504 costs them money because of personel and a loss of FTE funding. They are looking out for themselves not for your son. I am curious what school district you are dealing with. I would like to read the statutes for your state and policies for your district so I might be able to help you find a way to get them to coninue the 504 until graduation if necessary.

When I was in high school the district actually graduated me a year early to save money. I don't feel I missed out on anythng except the social aspects of school because of it.

The nutritionist should be helpful. But if you still need help with what to avoid, you will get help here.

Hang in there.

We're in USD 315 in Kansas. I had a visit with the dr. yesterday and when I signed the permission slip for him to talk to the school he sounded like he wouldn't be recommending Justin go back to attending full time any time soon. So I think we may be okay. Now if he just felt good enough to do some of his school work. In fact the doctor told me that if gluten free doesn't have him some better in a month to bring him back in. He'd still keep him gluten free but continue to check out other things in case this isn't the problem or if there is another underlying problem. I've also started thinking of taking him off dairy. That actually sounds harder than gluten and he doesn't seem too enthused but did agree he could try it. Judy

[annacsmom]

I really sympathize with your difficulties with your son. My daughter was just diagnosed "unofficially - meaning without the biopsy) two weeks before starting college away from home. But looking back, I feel so bad that since 7th grade all through high school she was miserable. After going to a myriad of different doctors, we settled on a naturopath who finally got to the bottom of it, but even she isn't very informed on celiac. My daughter was also told she was depressed (a very common diagnosis) and I'm sure part of her was from feeling so badly, but she also didn't have the typical celiac symptoms of stomach and intestinal problems, which made it very difficult to diagnose. I don't know how she even finished high school.

Anyway, my heart goes out to you, and I know that you will find a ton of support on this website. You absolutely need to stick to your gut intuition about your son. The gluten free diet has a lot of nuances that you'll want to learn about, including making sure personal care products are also gluten free. I hope you can hang in there, and I agree, about maybe you should try the diet as well.

I hope your son gets on the road to recovery very soon.

[Budew]

Happy to hear the school's more cooperative. And the doctors are checking in often.

Feeling good is a great motivator.

Gluten was hard. (I include oats)( Also soaps, lotions, and make up, as well as pans and the toaster)

Dairy broke my heart until I found that I can do a little dairy. ( hard cheese, cream, and high fat ice cream)

Nightshades were even harder (white potato, tomato, & pepper)

Sacylates (wrong spelling) helped more.

Then corn and soy elimination helped more.

Now I am going Lectin free. I know this will be difficult. But seeing how much all of the other eliminations have helped I am actually excited to give it a try.

I recently downloaded 150 of the healthiest foods. It was nice to see a long list of things I could have.

Now I don't use recipes, I look at the list of things on the good list and create a meal.

Last night's dinner was excellent! Salad, sweet potato, brussel sprouts, pecans, apple, mushrooms & onions with swiss cheese and ice cream for dessert.

[GFBetsy]

Is your son feeling well enough to do work at home? Brigham Young University has an independent study program that he could work with . .. you can use the classes for dual HS/college credit. It might be too expensive if he has to take more than a class or two, but it might help him keep up with his High School requirements while he's at home.

Here's their website: Open Original Shared Link

Good luck!

[daffadilly]

Judy, I feel for you making all these changes all the while not at the best yourself. I also think you should be tested for celiac. I like Enterolab.com because they test for the gluten intolerant gene DQ1, which I think is really awful to have - i have two of them, a grandson has two, & a granddaugher and my sister now have their tests at enterolab awaiting results.

you must have been doing some reading because you are right it is best to cut out dairy at the same time as gluten. he should know that this might not be permanent but necessary to find out what it going on...

please give him a b12 vitamin everyday (&take one yourself)

make sure he gets plenty of rest...

and ditto on school is not the first priority at the moment

i hope he gets a lot better real soon

stick to the basic foods as long as you can hold him off the gluten free brownies!!!

read the boards and check the recipes and meal ideas etc.

oh, a friend of mine was just telling me that she has been making pizza casserole, gluten-free pasta or rice noodles, pepperoni chopped up, black olives, mushrooms, marinara sauce, italian seasoning - bake in oven till bubbly

[Mom2Ryan]

I don't know how things work with your state. I'm in education and we have kids who go on home hospital or home school where teachers actually come into the house and provide the work. They only require a doctor's note stating there are medical concerns and not necessarily a "firm" diagnosis. So he can be getting the education why they are trying to figure out his difficulties. I just thought I would menton it to you and I wish the best for you!

[judycolby]

I don't know how things work with your state. I'm in education and we have kids who go on home hospital or home school where teachers actually come into the house and provide the work. They only require a doctor's note stating there are medical concerns and not necessarily a "firm" diagnosis. So he can be getting the education why they are trying to figure out his difficulties. I just thought I would menton it to you and I wish the best for you!

I've heard of schools doing that but I'm not sure if right now he is mantally able to do the school work without his grades suffering really bad. At the moment my plan is that if it gets close to the end of the semester and he is still in bad shape I'll see if he can get incolpletes and carry the classes over to next semester. IF he was to ever start feeling good he could finish all his classes in a matter of weeks if he had to.On his functional days he is a good student. So I'm going to try not to worry too much about his graduating until we get into the spring. I just think it would be good for his emotional health if he can graduate with his class like he wants too. But I guess we'll see. There may come a day when it no longer seems an option. Judy

[Adelle]

I first started having symptoms when I was 16. By the time I was 17 I had quit my job, stopped riding horses, and then I quit school. I was just too tired. I went to the "alternative" school for literally 1 week, finished my credits and left. I was just too sick. My mom didn't believe me, I moved out, lived in my car, couch hopped, got sicker and sicker. I figured it out. I don't have an "official" dx. I don't need one, u couldn't PAY me to eat gluten. it takes time to feel better. But u r doing the right thing! Believing him and working so hard to support him means more than u know. Trust me in 5 years HS won't matter anymore. GED, dropout, early grad. Whatever. He needs to HEAL. He can finish HS at a local community college later (if ya'll can afford that). I was a 3.985 GPA student, 1400 sat score, guess what? I didn't go to college. I couldn't, and after u go to community college for a while, 4 yr schools don't even care about HS grades! If people label him a "dropout" tell them to, well... U know. His health is important! And he can get better!! I was "diagnosed" bipolar, borderline personality disorder, depressed, on and on. Now I'm out of therapy, off meds, and I'm okay. It was actually my therapist who first believed me (other than my hubby).

U r doing the right thing fighting for him.

Everything will be okay. Trust me, u can survive this and it'll work out!

Sorry for the rambling.

[judycolby]

I first started having symptoms when I was 16. By the time I was 17 I had quit my job, stopped riding horses, and then I quit school. I was just too tired. I went to the "alternative" school for literally 1 week, finished my credits and left. I was just too sick. My mom didn't believe me, I moved out, lived in my car, couch hopped, got sicker and sicker. I figured it out. I don't have an "official" dx. I don't need one, u couldn't PAY me to eat gluten. it takes time to feel better. But u r doing the right thing! Believing him and working so hard to support him means more than u know. Trust me in 5 years HS won't matter anymore. GED, dropout, early grad. Whatever. He needs to HEAL. He can finish HS at a local community college later (if ya'll can afford that). I was a 3.985 GPA student, 1400 sat score, guess what? I didn't go to college. I couldn't, and after u go to community college for a while, 4 yr schools don't even care about HS grades! If people label him a "dropout" tell them to, well... U know. His health is important! And he can get better!! I was "diagnosed" bipolar, borderline personality disorder, depressed, on and on. Now I'm out of therapy, off meds, and I'm okay. It was actually my therapist who first believed me (other than my hubby).

U r doing the right thing fighting for him.

Everything will be okay. Trust me, u can survive this and it'll work out!

Sorry for the rambling.

Thank you I feel better hearing that, because it may come to that. I sometimes tell him half joking half serious that if he has to be sick like this he's lucky to have me for a mother. With my Crohn's I understand being sick without all the outward signs that othrs have when they have the flu or something. I've believed him from the start and only occassionally had doubts that I kept to myself. I think maybe other people might not of believed him then he'd have anothr set of problems to think about. I just wish I could fix him I feel so bad watching him. This week he seems to be getting worse every day. Thanks, Judy

[Amooliakin]

I really feel for you and your son. This is so hard! My daughter was diagnosed a couple of months ago. She is 8 and I agree that one of the biggest and clearest symptoms on the outside was her mood change.

Because she complained of tummy aches on and off since she was 5 and no one could find anything wrong, I just thought she was overly sensitive. But it got worse this past summer with more symptoms and we had to go to a GI to get the real diagnosis. Since she has gone totally off gluten (and as you know you can't allow even a tiny bit of cross contamination) she has stopped having reflux, gas, stomach pain, nausea, and diarrea. What is most impressive though is that her mood has lifted, she is more tolerant of frustrations at school and at home, etc.

I know there is a big difference between 8 and 17. But a parent is a parent no matter how old your child is. When your son starts feeling better (as I hope he will soon) your mood will lift too and everything will seem easier.

Hang in there.

[amybeth]

Mom2Ryan, you took the words right out of my mouth.

I am a teacher in PA. "Homebound" instruction is offered for students on extended suspensions and for medical absences. A doctor's note explaining his inability to attend school is required. Students receive 1 hour per content area each week with a qualified teacher. IE as a teacher certified in a particular subject area, I can ONLY provide homebound in that area.

Of course 1 hour a week is limiting, but the student can then complete work throughout the week as he/she feels up to it. There are still deadlines for due dates and grades. The student's original teacher receives all of the completed work from the homebound instructor and grades the student, so he/she is evaluated the same way as classmaters.

During homebound, I often spent the hour administering assessments, reviewing assignments and explaining expectations.

I have seen students on medical homebound for a number of reasons - broken foot (too risky to walk the crowded hallways at school), severe bacterial infections, extreme depression, etc. I believe, there is a time limit. Once that time has passed the student must provide re-evaluation information from the doctor to remain on homebound.

This may be an alternative. It would allow you and your son to monitor his food and limit cross contamination more carefully as he begins the diet, too. (although they would not accept that reason alone for homebound) . It would also ease any stress he is feeling about his academics. It's important, though, to maintain social connections if the child is at home for any extended period. Many homebound students feel out of the loop with their friends.

Good luck!