9 Mo, Weight/length Slowed, Chronic Diarrhea, Is It Celiac?

[shelby1]

My son is 9mo. and we are perplexed by his myriad of symptoms in his short life. I am hoping you can help us out. I will try to be as concise as possible.

He has had sensitivities to medications, foods, vaccines, etc.

When we first introduced Tylenol, he would become jittery and almost hyperactive after about 4 hours. On occasion, this still happens.

At 4 mos, the HIB vaccine (we only do 1 at a time) caused him to violently scream within 3 hours of receiving the shot and his injection site swelled. At 6 mos, the DTaP did not cause any reaction. Ironic because HIB usually is least reaction and DTaP one of the highest.

Dry patches of skin on the back of his thighs and upper arms off an on.

He had a perpetual stuffy nose from Oct-Jan which we (& ped) chalked up to dry air in our home. In Jan, the stuffy nose turned to sinusitis/infection and he was given Amoxicillin.

On the last day of Amoxicillin treatment, he broke out in very large 4inch half-moon shaped hives. The ER gave him Benadryl/Prednisone. After 4 days, we were switched to Zyrtec because the Benadryl was causing him to be jittery/hyperactive/fussy.

After the hives subsided, he got a red dotted rash that was similar looking to roseola. No fever.

We took him to an allergist who did subcutaneous testing - he was negative. He was diagnosed with an idiosyncratic reaction/serum sickness like reaction to Amoxicillin. (It is expected to happen again if we use the medication but is expected to grow out of it. We have opted to use other antibiotics if necessary)

Allergist said in some children like our son, there is a metabolic or genetic anomaly that causes these reactions to things.

By the beginning of Feb, he began with chronic explosive diarrhea. We started to notice that it got worse when he ate Cheerios. I removed Cheerios which lessened the wateriness of the diarrhea but when reintroduced, went right back to liquid. I permanently removed them.

From 6-9months, he has only gained 8oz and grown 3/4 of an inch. He was always in 90 or above percentiles and this alarmed our pediatrician.

After consults with our pediatrician, negative stool cultures and high lymphocytes in bloodwork, we were sent to Children's Hospital for further diagnosis.

Currently he is to have weekly weight checks for 1 month and I was to remove as much wheat/gluten from his diet as possible.

As of yesterday, 5 days after taking the suspected food offenders out, he has still not gained any weight. In fact, it appears that he has lost some.

Since removing the Cheerios and limiting his Gerber Puffs (to under 25 a day), his diarrhea is 100% gone!

I am giving him high calorie foods and nursing as often as possible.

Next week if the diarrhea stays gone, I am supposed to reintroduce gluten again and see what happens.

We were offered the Celiac blood tests at Childrens (Anti-gliadin, IgA & tTG) right away but opted to wait to see his weight changes and reaction to the reintroduction of Cheerios & more gluten containing foods.

How long does he need to be back on gluten to have an "accurate" result from the blood testing?

Can you offer any insight to other things?

Other Background:

I have IBS. It started after I got CDiff in 1997 and went into remission while I was pregnant when I got CDiff again. I have been symptom free since. I know that Celiac is often misdiagnosed for Celiac. Is it possible for Celiac to go into remission, though? Mine seemed to be related to my hormone fluctuations and since I'm still nursing, my hormones are still altered.

I also have a mild lactose intolerance.

No one in either side of our families is diagnosed with Celiac, though my side has a history of bowel problems associated with milk-rich foods and stress (IBS).

Thank you for any assistance you can provide us.

[amber]

You will need to put him back on gluten to get an accurate result of the blood test. I would say he would need to be back on gluten for at least 2 weeks. I would check with your pediatric gastroenterologist though as to what they think.

Is it celiac? Could be but then again could be some other kind of intolerance such as lactose. My daughters lost 1 kilo in weight when she was 1 1/2 and that was the main symptom of celiac for her.

Good luck.

[gfgypsyqueen]

My child is now two and we have been battling all sorts of issues from the start. Although none sound as serious as yours. We have food allergies and celiac disease in the immediate family and autoimmune diseases throughout the extended family.

My child dropped 30% at her 9 mth check up. I was told that is normal. She will just be smaller than the older child. After many long battles and debates with family, doctors, etc she was just tested (biopsy) for celiac disease. We get the official results this week, but they say she does not have it. I want to see the paper work before I believe them.

Shortly after the 9 mth old drop in percentages chronic explosive diahrea started. It lasted for months. No medications, creams etc would stop the blistering sore rash. (I have home made wipes that are less irritating on sore butts if you need it.) We finally took her off gluten - just to see- and sure enough the rash stopped. The problem is we had to put her back on gluten to get tested. When she started eating gluten again - no rash.

At about 18 mths she still wore 12 mth old clothes and shoes. After months of forcing the issue the doctors finally consented to pass me along to the gastro. The biopsy was done and we are awaiting the office visit to get the results explained. We were so sure of the results being she has celiac disease we took her off gluten for a few weeks and then the Dr insisted she go back to eating gluten. Now she has a terrible rash again.

The long and short of this is I am now very concerned about the health of this child who went from 75% to now 5%. She is barely growing, therefore doctors say she can't have celiac disease because she IS growing a little. She has milk intolerance and PCN allergy.

In my opinion, find a kinesiologist (get a health food store to recommend someone) and take the child there. At least you will get information on vitamins and supplements that will not set the baby off further while you try to find out what the problem is. I think the child will have to be on gluten for several months to get an accurate biopsy. The blood tests are not so good at this age. If you are still nursing, then the numbers are really unreliable.

Good luck to your little one.

[Ursa Major]

It will take AT LEAST four months of eating gluten again for the tests to even have a remote chance of coming back positive for celiac disease. For babies the biopsies are not more reliable than the blood tests. Obviously both your babies react violently to gluten. Slowed growth is a very common celiac disease symptom, as are rashes and diarrhea. What more evidence is needed?

I suggest both of you ask to have those kids tested to see if they have the celiac disease genes. Those, along with a positive response to the gluten-free diet would be a lot more indicative of celiac disease than all those other tests at this age.

If a baby has villi damage, it would take a lot longer than five days for that damage to heal to absorb enough nutrients again to start gaining weight and growing. Give it a little longer!