New...many ?'s

[mamacita528]

Hi

I hope you don't mind if I ask some questions. I had no idea how complex Celiac Disease is. I'll give you a little background before I fire away. My son, who just turned 13, has been ill for about 6 weeks now. He has missed close to 4 weeks of school. It started with vomiting/diarrhea (twice, four days apart). After the second bout with the vom/D, he had intense stomach pain that has not gone away. In addition to the stomach pain, he's had joint pain (in his knee), his eyes burn constantly, and he's suffering from fatigue.

After many trips to the ER, and his pediatrician's office, the Pediatric GI doctor finally agreed to see him. He actually met us in his office on his day off. He took the history and scheduled my son for an upper endoscopy and a colonscopy. We were, at first, thinking Crohn's Disease, as my husband and his sister both have it. All of the symptoms seemed classic.

After doing the colonoscopy/endoscopy the GI doctor said he would be very surprised if he has Crohn's Disease that the colon and ileum looked fine. His stomach was inflammed and red, as was the duodenum and suggested possible Celiac disease. I've gotten some of the results from the office nurse, but she was unable to explain what they mean. I am still waiting for the doctor to return my call. They're still waiting for a 'tissue' sample test? I am not sure what that is- I think it is a blood test.

Since the GI doctor mentioned Celiac, we started my son, immediately, on a gluten free diet. After a few days his symptoms seemed to begin to subside. His pain level had gone down to a 1-2 (it had been a 6-7 consistently). Each day he seemed to improve, even returning to school. After he eats dinner his pain level raises slightly, but I attributed that to his stomach still being in the healing process.

That brings me to the few questions that I have. I know everyone has varying symptoms. It is very much the same for Crohn's Disease, as I know from my husband. I'm hoping someone could offer any information or advice they might have based on their own experience with Celiac Disease.

My first question is how sensitive is this disease to gluten. It seems the two times my son has been unknowingly glutened, his pain spiked and he spent the day in the bathroom, eyes burning, and exhausted. Today was one of those times. I made him gluten free waffles, but, ignorant me, put Mrs. Butterworth's syrup on them (malted barley in the ingredients list). The symptoms kicked in about 20 minutes after he'd eaten. I couldn't figure out what it was- then I checked the syrup! UGh. I felt horrible. How sensitive are those with Celiac to something like this...does this sound like I glutened him?

Another question I have is, how long after being on a gluten free diet, does one feel completely better? Do you ever feel completely better?

Lastly, is everyone with Celiac Disease also Lactose Intolerant? My husband is LI, and we're wondering if he also has Celiac (the genetic link to my son's).

I'm sorry for dumping so much information on you and asking so many questions. I am desperate at this point.....thanks in advance for listening!!

Ericka

[HAK1031]

hola mamacita!

Your son's symptoms are indicative of celiac. The tissue sample that they were referring to was probably a biopsy that was checking the condition of the villi (tiny fingerlike projections along the walls of the intestine, they become flattened when a celiac injests gluten).

Yes, the barley malt is PLENTY to set off a celiac. Much smaller amounts than that have been known to do it- ie shared cutting boards with bread, shared colanders, toasters etc. Nonstick pans also hold onto gluten, so it is important to get rid of these or not use them for your son's food. A little bit is never ok...amounts smaller than the tiniest crumb can make us sick. That said, don't feel guilty. This diet has a sharp learning curve, and many of us have accidentally glutened ourselves because we didn't read ingredients carefully. Make sure you teach your son what to look for in indgredients as well, he's old enough that there will be situations where he has too look out for himself.

As for lactose intolerance, the tips of the villi are what produces lactase, the enzyme that lets us digest lactose. When the villi go, so does the lactase, making most celiacs lactose intolerant...at first. It may go away after a few months of healing. Your husband's LI alone wouldn't concern me, but given both his Crohn's and your son, I would encourage him to get checked out.

[Darn210]

My first question is how sensitive is this disease to gluten. It seems the two times my son has been unknowingly glutened, his pain spiked and he spent the day in the bathroom, eyes burning, and exhausted. Today was one of those times. I made him gluten free waffles, but, ignorant me, put Mrs. Butterworth's syrup on them (malted barley in the ingredients list). The symptoms kicked in about 20 minutes after he'd eaten. I couldn't figure out what it was- then I checked the syrup! UGh. I felt horrible. How sensitive are those with Celiac to something like this...does this sound like I glutened him?

Another question I have is, how long after being on a gluten free diet, does one feel completely better? Do you ever feel completely better?

Lastly, is everyone with Celiac Disease also Lactose Intolerant? My husband is LI, and we're wondering if he also has Celiac (the genetic link to my son's).

I'm sorry for dumping so much information on you and asking so many questions. I am desperate at this point.....thanks in advance for listening!!

Ericka

Welcome Mamacita! You have found a wonderful resource for learning to navigate the gluten-free world. There is an enormous amount of information and many many members that will share their experiences.

Yes, it sounds like you glutened him. It doesn't take much. And the amount varies from person to person . . .as does how fast you react, how long the reaction lasts, and how intense the reaction is.

Not every celiac is lactose intolerant, but it would be safe to assume they are in the beginning until the gut has healed. Kids heal quicker than adults. My pedGI told me to assume my daughter was lactose intolerant for two months . . . his estimate on how long it would take her to heal and she "officially" had no real damage. Some celiacs can't tolerate dairy at all and some find that after going casein free for a while, they can reintroduce it.

Like HAK said, you need to be diligent with gluten crumbs. You son needs his own cutting board, toaster, strainer, etc . . . he also needs his own butter, peanut butter, mayo, etc as crumbs in shared containers/condiments will cause him to be glutened.

We all make mistakes, there is lots to learn. The upside to the mistakes (and believe me, there will be more) is that at the age of 13, he sees/feels/knows what happens so that when he is out on his own with his friends, he won't be pressured into eating something he shouldn't have.

If he has any favourites that you are looking for replacements for, just list them and we can steer you towards a good alternative or recipe.

Here is a list of companies that do not hide the gluten. You can read their labels and if it does not say Wheat, Rye, Barley or Oats on their label somewhere, then it is not an ingredient and it is not hidden in a vague term such as "natural flavor".

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