Symptoms That Come And Go

[lifeinhim61]

Hello everyone,

I am new to the board and trying to get as much information as I can about celiac disease. My son is 6 yrs old and has had diarrhea on and off since he was 2. We thought he had a lactose intolerance as he had a bad virus when he was 2 yrs old and could not drink milk after that. The diarrhea continued on and because he wasn't in school I could handle the dirty diapers and the continuous running to the toilet. I discussed it with my doctor many times but he suggested I try more fiber and that it probably was something he'd outgrow as his growth and weight charts were fine. Last summer he had a bout with diarrhea that went on for 2 weeks. He was tested for Giardia and other parasites, and had a complete CBC workup. Everything came back fine. We figured it was just something going around. The diarrhea continued on all this year and finally I said enough is enough. I took him to a specialist who is now running tests for celiac and other food allergies. The child had a bad week last week, running to the toilet every half hour or so with just a bit coming out each time, but confining all of us to the house. The results should be in by his appt. next week. They are running many stool tests and blood tests. He already had a hydrogen breath test which came back negative for Lactose Intolerance, praise God for that as the kid has been missing his milk! He is doing better this week, but my main question to you is, can a person have symptoms that come and go and not be present all the time? I am not restricting his breads and grains right now until I know the diagnosis, but there are good days and bad days and I thought with celiac that you pretty much have bad reactions each and every time you eat wheat or gluten. Is this true? I want to mention also that my son has had a history of headaches that started when he was 4 and he would get them every few weeks, esp waking him in the night. We had an MRI done on him and a pediatric optometrist told him he had dry eye and prescribed drops. He continues to have the headaches, esp after a long day at school, but then again he does have a snack before he leaves for the day, mostly wheat-laden. Please help, and hopefully we will have a diagnosis soon!!! My son's name is Luke. I have an older son who gets diarrhea on and off, not as frequent as my younger son, but the older one, Alec.. (9) has many seasonal allergies and is on allergy meds every day. Thank you kindly for reading my post. Looking forward to hearing from someone soon!

Rose Herczeg in Florida

[plantime]

Getting both of your kids tested would be a very good idea. Yes, symptoms can be intermittent. It just depends on how the gluten hits, and how the body reacts. Since celiac disease is genetic, getting the parents tested would also be a good idea.

[lifeinhim61]

Thank you for the advice. I will mention it to my doctor if the results are such that my younger son has celiac disease. It would help for all of us to know of others in the family with it so we can treat ourselves. God bless!

[stargirl]

I'm 17 and started having gluten intolerance symptoms at about nine and my symptoms were very intermittent. Sometimes I would be very ill and then I would be fine. I got sick for three weeks the summer before I was diagnosed, similarly to your son. I stopped eating entirely for a while. But I am doing so much on the gluten free diet and am very sure it is the correct thing for me to be doing.

[lifeinhim61]

Hi again,

As an update about my son Luke. His blood and stool tests all came back 100 percent normal which really stumps me. But I have to tell you, I have had him off milk products for 4 years now (only small amounts) and he continued to have diarrhea for all those years. After a lactose breath test last month, there was no findings that he had lactose intolerance, so I put him back on milk products, and he is eating cheeses, milk, ice cream, etc. again. The kicker is that this week, due to eating all of these things, he has had normal bm's! I am astounded. The doctor thinks it is IBS and that it will come and go, like a rollercoaster ride between diarrhea and constipation. The week before this past week my son had diarrhea every day. This week nothing. IT's very strange. But the doc seems to think that putting him back on milk and cheeses is helping to bind him up and 'glue' things together in the intestines. He has not suggested any more testing saying that there is a less than 1 percent chance that there is a malabsorption issue in his colon, so he is leaving that up to us. I am thankful that he does not have celiac disease, but not totally comfortable as I still don't know what has caused all these years of diarrhea. We'll see what the continuation of the milk in his diet does. Now to worry about my older one who is also complaining of stomachaches. He has never been taken off milk products, but he has horrible seasonal allergies where he is swallowing a lot of mucus. I'm sure that is part of it and we have him on a nasal spray to dry up some of that. Any suggestions?

Thanks for listening and God bless everyone who has read this and replied!

Rose

[burdee]

Hi Rose: After reading your doctor's advice to continue giving your son, Luke, dairy products to 'glue up' his diarrhea symptoms, I thought I should share my celiac experience:

I had many celiac symptoms all my life, but never suspected celiac disease, because I usually had constipation NOT diarrhea. Excruciating abdominal pain and bloating forced me to consider celiac disease last April. After going gluten free eliminated SOME of my painful symptoms, I did Enterolab tests for gluten AND casein (milk protein) antibodies. Those results told me I had BOTH gluten and casein antibodies/intolerance. When I eliminated the DAIRY, my constipation disappeared and I slowly developed almost normal stools (no steatorrhea) fior the first time in my life (without laxatives). Recently, I had another accidental gluten ingestion (I can discern gluten from dairy symptoms). For the first time, my symptoms were really loose stools or ALMOST diarrhea for me. SOOOO since dairy products 'glued up' your son's diarrhea, you might consider whether he also has CASEIN as well as gluten intolerance. Since casein is the milk protein, lactose (the milk sugar) intolerance tests won't detect casein antibodies. "IBS" is NOT a disease, but it is a LABEL doctors assign to symptoms for which they can't determine a cause. MANY celiacs are MISDIAGNOSED with IBS.

Also my symptoms with dairy products included chronic sinus infections and chronic allergies. Once I eliminated dairy I have had NO allergy problems, sinus infections or colds. I would suggest you try a dairy free diet on your older son as well. I would also suggest you have BOTH sons tested through Enterolab which offers a gluten/casein stool test package.

BURDEE

[3boyzmom]

Rose,

Do you have copies of the blood work results... the exact numbers? The doctor may say he doesn't have Celiacs disease based on negative tTg and IgA. If he had elevated IgG only, it would be considered a false positive.

I would recommend you look into getting the books Open Original Shared Link and Open Original Shared Link I have found them very informative regarding grains in our diet.

God bless,

Priscilla

[FreyaUSA]

Here is my major concern with diagnosing celiac disease. If your child came back as negative for celiac disease, he may still be gluten intolerant. I've read several good analogies. Do you wait for the heart attack to control your cholesterol? No. Do you wait for cancer to give up smoking? No. Do you wait for your small intestine to be so damaged that you test positive for celiac disease before giving up gluten? Um, according to typical responses, yes.

I'm not saying your son has celiac disease. He may be gluten intolerant though. I suffered from headaches for years, they were just a part of life. My kids were downing the allergy meds for seasonal allergies. Intense intestinal cramping and diarrhea after a meal was too common for me to even bother complaining of anymore. I had every test imaginable done to me to find out what was what, except a celiac disease test. I never bothered doing the entire celiac disease testing because, by the time I'd gotten to the doctor, it was 2 months after going gluten free and I'd never felt better in my life. I don't need a heart attack to tell me I have a problem with this stuff. I had all three of my kids tested (blood work) and they all came out with borderline results. Borderline was enough for me. They've been on a gluten-free diet since this summer and they have all improved healthwise. No more allergies. My teenage son's skin completely cleared up. My daughter's tonsils SHRANK (she was recommended for having them removed because they were so large that the uvula was completely invisible, smashed between to two. Some days you couldn't even see her throat past them.)

Why not give a gluten-free diet a shot with your son? It certainly can't hurt him. For my kids, I started seeing a positive impact within a few days (though it was amazing after 2 months.) If he improves, you know he's intolerant and just hasn't had the damage done yet (and that's a GOOD thing!) If he doesn't improve, go back to feeding him normally. (The Enterolabs idea is very good too.)