Think Husband And 2 Yr Old Son Have Celiac

[kathyhay]

wow! I have been cruising around on this website all day long today! What a terrific resource!

My son is 2 years, 2 months old. Yes, I am still nursing him. He is having MAJOR problems with weaning. I expected to have him nursing 2 times a day by 18 months, but instead he is still nursing about every hour! I think that this may be a symptom of celiac. His stools are never "solid". I don't change other kids' diapers, so I don't know what his poop is supposed to look like. But one day I was baby sitting some other kids and their poop looked like turds in their diapers. My son's poop is always a pudding-consistency, usually a pretty light color also. My son is very short for his age 31" and 24 pounds. My husband is 5'8 and I am 5'3. My son has major eating issues, but he looks very healthy and acts happy much of the time. Here is my struggle with him over food: He is very hungry often. He asks to nurse, but since I know he is actually hungry I offer him several different foods and drinks that I know he likes. He doesn't want any, he wants to nurse. So I let him nurse for a minute, thinking it will take the edge off for him and make him less frantic so that he can eat. This works about 25% of the time. The rest of the time, he refuses food again and goes back to playing. Then he comes back a few minutes later wanting to nurse again. I offer food for several minutes, trying to find something that he will eat-- anything! All the while he is crying, grabbing at me asking to nurse, when I know that nursing isn't going to make his stomach stop hurting for food. About twice a day I can get him to eat a substantial amount of something. If he had a food that he would eat every day, I would be less frustrated. He likes pasta the most often, but it isn't dependable. He likes to eat chicken quite a bit also. I wouldn't say he's a "picky eater" just because he has eaten many different types of foods and enjoyed them(at least once). I am going to post my husband's symptoms in a separate message because this is taking me forever to post(2 year olds are rather distracting!)

[gf4life]

Have you talked to a doctor about getting him tested? At two he really should have some formed bm's, but if he is nursing often then they wouldn't be as solid as they should be. If he is having a problem with certains foods, then this could be a reason that he chooses nursing over eating regular food. The regular food might be causing stomachaches or gas, cramping, etc. Even at two (and younger) babies will avoid was is causing them pain.

I would suggest trying him on a gluten free diet, except that he should be tested first. If you try the diet before testing it can alter future test results and cause them to be falsely negative. So don't cut the gluten out yet.

God bless,

Mariann

[kathyhay]

anyway, my husband has these symptoms which are less difficult to describe: depression, anxiety, bloating, distended belly, he thinks he has ulcers sometimes, migraines, sleeps during church and in the car even on very short drives around town, can't ever remember his dreams, but sometimes he has really freaky nightmares that are so realistic he doesn't want to talk about them, crankiness and irritability, social leprosy, gets sick(any combination of stomach ache, headache, vomiting) when he eats mexican or oriental cuisine from a restaurant, and more that I can't think of at the moment. When we went together to see our family doctor, he played down his symptoms and the doctor diagnosed him with migraines and wrote out a prescription for 5 pills of Maxalt(which lasted exactly one month). Anyway, the whole purpose of the visit was to get him diagnosed with celiac disease. After talking with my husband, the doctor says that celiac is rare and my husband doesn't have diahrrea or abdominal cramps, so he probably doesn't have it. I tell her that it is one of the most under-diagnosed diseases in America, she asks me where I got that information, I say Reader's digest and the internet, she says that just because it's in a magazine doesn't mean it's true and most medical information on the internet is wrong. I am left with my jaw hanging open. I say why don't you just draw some blood and get it tested, she says there is no blood test for celiac-- the only way you can have it diagnosed is through biopsy which is painful and expensive, I say no, there's a bloodtest that shows if he would have certain antibodies present, she says well if there is I don't know about it. Meaning she didn't give a rat's ass about what she didn't know she just wanted to diagnose him with migraines and get us out of her office. I felt so defeated after that visit! It took me years to get my husband to finally go to the doctor regarding his wide range of symptoms(since his symptoms were so vague, we both figured we would never find out what was wrong with him). It took me several months after that reader's digest article to get him to listen to me saying "celiac disease" to believe that there might actually be a name for it. So, after the appointment-- he having a traditional faith in physicians-- he started taking the Maxalt when he felt a migraine coming on, which did stop the migraine from blooming into what it could have been. But he has so many more symptoms than migraines. And I've always been convinced that all of his symptoms were connected somehow. I figured it was malnutrition since he is such a picky eater. He very rarely eats fruits or vegetables. He has a sensitive stomach. When he gets sick with stomach flu or whatever, he can get extremely sick whereas I just bounce back after a couple of days.

Anyway, tell me what you guys think. I want to hear from people who have "been there" and know what it is like to see this disease and/or experience it. Thanks.

[kathyhay]

I have an appointment for Sep 10 to see a pediatrician with my son. In the meantime he's driving me bonkers with his food issues.

He is always happier after he has taken several bites of something.

[kathyhay]

I forgot to add that my husband always has bad breath, sometimes it smells like horse manure very badly. He blames it on his sinuses.

[CarolynM]

Kathy

First, change doctors! To not even know there is an antibody test is horrible! Although most doctors won't accept that as diagnosis, they will want to do a biopsy. My husband had many vague symptoms like you described. Our daughter is having trouble; after her positive blood tests, my husband began cutting wheat out of his diet and feeling better. That is really the true test - change the diet and see if he feels better. We went through the biopsy with our daughter, only to get negative test results about a month ago, but I still see the connection - I have logged her food and stool. We just returned from vacation and are going gluten-free tomorrow.

The breastfeeding might still be making your sons looser than normal. You mentioned pasta - my duaghter loves it but I see a reaction to it every time.

Keep us "posted".

[kathyhay]

We've all been gluten-free for about 5 days now. No difference in anybody yet. I was hoping my health problems might go away, too (asthma, eczema, depression). My husband has just been complaining about sleeping more poorly. It could be the heat since one of our air conditioners was broken until we got a new one yesterday. He had another headache and stomach ache today.

[jenad]

Kathy,

keep it up!! My Celiac son nursed until he was four. i definatly think it was because food was not his friend. He still does not eat much but i think the diet is helping. it has been about a year. remember if he is gluten-free and you are nursing you need to be gluten-free also. good luck, get the blood test.

jena

[Niteyx13]

Kathy,

Before going gluten-free I was like your husband in many ways, especially with sleeping anytime, and anywhere. It only took a few days on the gluten-free diet to change my sleep patterns to where I had a very very hard time sleeping. And, I have heard this from other people. Yet, I still don't feel very well in my tummy. It sounds to me like your husband is on the right track.

I also agree about getting another doctor. Many doctors kept giving me IBS meds, and telling me to get more active (when I had no energy for that). I brought up celiac with another doc and she told me the test are expensive stop eating "Carbs" and you'll feel better...DUH! I went to a new doctor last week and I left the office with an order for the blood anti-body test (to be done when I have been eating gluten awhile again, of course). So, what I guess I am saying is don't give up! This doctor was soooo awesome. He listened to why I believe I have it, and he didn't do that "I'm the doctor I know all" crap to me. He was so open. So, don't give up hope. There are good doctors out there!

Deanna