Questions

[kimy]

Hello, I am new to this board and I have lots of questions. My son is 15 months old and he was the perfect baby. Around 12 months old he started getting very irritable and always wanting to be held. My husband and I just thought it was the age, as this is our third child. I took him the other day for his 15 month check-up and the doctor is worried about a number of things. He has weighed 19 pounds since his 9 month check-up, but he eats a lot. He is allergic to eggs, has ezecma, and his bowels are very foul smelling. He is ordered blood test for celiac. I am reading that it might not come back positive because of enough gluten in his system.

Also, as I am doing more research, I have a lot of the symptoms that I just thought were normal. I have headaches 5 days a week, I am anemic, I have floating and mucusy stools, I have severe shoulder and joint pain, was tested for vit D because of joint pain and my levels are at an 8. I have been taking vit d for the last few months, but really no relief, I am always tired, but also thought this was because I work full-time and have 3 kids under 7. I could sleep for 12 hours straight and still be tired. I have had 7 miscarriages, which my ob says it is because I have antiphospholipid syndrome. I have the worst teeth ever imaginable. I am also very constipated. I will sometimes lay in the bed at night with stomach cramps that are worse than labor pains. I don't think I have ever been to the doctor and told them all my symptoms at once. My husband keeps telling me it is because I am getting older. I am only 28.

While doing some more research on celiac, I have also come across high liver enzymes. How accurate is this? My husband has had them for about 10 years now. Ever since we met. We have had a ton of blood tests done, ultrasounds, and a biopsy. We even saw a liver specialist. Nobody can figure out why. He also sleeps a lot, but he swears I am just seeing things.

What is your opionon on all of this?

Thanks so much,

Kim

[nasalady]

Hi Kim,

Welcome to the board!

Hello, I am new to this board and I have lots of questions. My son is 15 months old and he was the perfect baby. Around 12 months old he started getting very irritable and always wanting to be held. My husband and I just thought it was the age, as this is our third child. I took him the other day for his 15 month check-up and the doctor is worried about a number of things. He has weighed 19 pounds since his 9 month check-up, but he eats a lot. He is allergic to eggs, has ezecma, and his bowels are very foul smelling. He is ordered blood test for celiac. I am reading that it might not come back positive because of enough gluten in his system.

Your son's symptoms do fit the general celiac picture, although you should keep in mind that there could be other causes for these problems. Unfortunately the blood tests for celiac disease are not very accurate in young children.

My granddaughter Carly fit the classic "celiac baby" profile: thin as a rail, down below the first percentile on the growth charts, gastric symptoms including gas and diarrhea, etc. But her bloodwork was negative, as was her first intestinal biopsy at age 2. The poor little thing continued to lose weight so her doctor decided to do a second biopsy a year later. That one was positive. She is so much healthier now on the gluten free diet...she's actually starting to catch up with her peers on the height-weight charts!

My other granddaughter, Emma (now my daughter by adoption) has gluten issues too. Her eczema cleared up completely and she's started gaining weight after I put the family on the gluten free diet in January. She is also WAY under the normal growth curve since she weighs only 22 pounds at the age of 3!

Also, as I am doing more research, I have a lot of the symptoms that I just thought were normal. I have headaches 5 days a week, I am anemic, I have floating and mucusy stools, I have severe shoulder and joint pain, was tested for vit D because of joint pain and my levels are at an 8. I have been taking vit d for the last few months, but really no relief, I am always tired, but also thought this was because I work full-time and have 3 kids under 7. I could sleep for 12 hours straight and still be tired. I have had 7 miscarriages, which my ob says it is because I have antiphospholipid syndrome. I have the worst teeth ever imaginable. I am also very constipated. I will sometimes lay in the bed at night with stomach cramps that are worse than labor pains. I don't think I have ever been to the doctor and told them all my symptoms at once. My husband keeps telling me it is because I am getting older. I am only 28.

Your symptoms sound VERY familiar to me, and probably to many other people on this board. I can totally relate with not telling the doctor everything at once! This definitely delayed my diagnosis for a long time. I guess I thought it was normal to have diarrhea all the time...

While doing some more research on celiac, I have also come across high liver enzymes. How accurate is this? My husband has had them for about 10 years now. Ever since we met. We have had a ton of blood tests done, ultrasounds, and a biopsy. We even saw a liver specialist. Nobody can figure out why. He also sleeps a lot, but he swears I am just seeing things.

Yes, high liver enzymes can be caused by celiac disease. Or by autoimmune hepatitis....I have both.

Kim, it really sounds as though you are in the process of answering your own questions, just by doing research on the Internet and visiting groups such as this forum.

You'll find that one big problem with celiac disease is that it can masquerade as many different illnesses. Lots of people have mostly gastric symptoms and will be told that they have "IBS". Others exhibit neurological symptoms (headaches, vertigo, hand tremors, blurry vision, etc) to the point that their doctors are sending them for MRIs to rule out multiple sclerosis! Still others break out in a rash from hell called dermatitis herpetiformis, which consists of incredibly itchy blisters and lesions that can take months to heal. Then there are those with no symptoms at all...."silent celiac disease". Celiac disease also causes fertility problems, including miscarriage and birth defects.

Also, just to confuse the issue, recent research has revealed that at least half of all celiacs are actually overweight, even obese! This seems to be exceptionally confusing to the older generation of doctors who were told in med school that people with celiac disease were always skinny.

The bottom line is that you're doing the right thing by trying to find the answers to your questions. Knowledge is power. We have all learned to be our own advocates, and advocates for our children as well. You may be lucky and have a doctor who is great, who is up on all of the latest info on celiac disease, or you may have one of the other kind of doctors.

It's very important for you to know that if you want to be tested, or have any of your family members tested for celiac disease, you all must be eating a lot of gluten for 2 to 3 months minimum before having the bloodwork or biopsy.

Of course, the very best test for gluten problems is to stop eating gluten for a couple of weeks and then go back to eating "normally" again. If you feel FANTASTIC while off gluten and then feel like you're dying when you go back on gluten you have your answer! Not whether or not you have celiac disease, because you may have non-celiac gluten intolerance (NCGI), but just whether or not you have a problem with gluten.

For some people, it's enough just to know that they can't eat gluten....they don't need the formal diagnosis from a doctor. And it's always possible to have negative bloodwork and a negative biopsy and still have celiac disease (like me and my granddaughter Carly).

You have to make the decision that's right for you and your family.

Good luck to you!

JoAnn