Urgent Help, Desperate

[charley2006]

Please help.

My son was diognosed with a wheat intolerence around 7 months ago and has been kept on a cealiac diet advised by the doctors.

He has done really well and gained lots of weight and his attenance at school has improved in leaps and bounds.

But for the last 3 weeks he has complained of excruicating pain in the early hours of the morning (a simular reaction to if he had wheat in the past).

This can make him doubled up on the floor whimpering and on at least one occasion we considered an ambulance to take him to hospital.

The symptoms seem to ease later in the day but still make him feel quite unwell. (He does not eat late at night!)

He has also said he feels full in the morning when he wakes up.

We have an appiontment at his hospital tommorrow but we just hope he is well enough. So worried about him.

Has anyone else had symptoms like this?

[ravenwoodglass]

It sounds like he has gluten sneaking in somewhere. We can become much more sensitive to small amounts after our body has healed a bit. Have you changed out scratched pots and pans, colander, cutting boards and does he have a new dedicated toaster? What changed a month ago? Did he start a new script or vitamin? Is he eating a new food that he wasn't before? What is he eating? Is he eating mostly whole unprocessed foods? Be aware that some companies have a bigger cross contamination risk than others. It is not required that companies list CC risk on their products but some, like Frito Lay will mention the risk on the web sites. Did he start taking an arts and crafts class at school? It can be hard to figure out what is getting us especially since reactions can be delayed sometimes by as much a 3 to 7 days. Some of us also develop other intolerances. For example I am intolerant to soy and it took me a real long time to figure it out. Many gluten-free foods have soy flour or soy protein.

[cahill]

It sounds like he has gluten sneaking in somewhere. We can become much more sensitive to small amounts after our body has healed a bit. Have you changed out scratched pots and pans, colander, cutting boards and does he have a new dedicated toaster? What changed a month ago? Did he start a new script or vitamin? Is he eating a new food that he wasn't before? What is he eating? Is he eating mostly whole unprocessed foods? Be aware that some companies have a bigger cross contamination risk than others. It is not required that companies list CC risk on their products but some, like Frito Lay will mention the risk on the web sites. Did he start taking an arts and crafts class at school? It can be hard to figure out what is getting us especially since reactions can be delayed sometimes by as much a 3 to 7 days. Some of us also develop other intolerances. For example I am intolerant to soy and it took me a real long time to figure it out. Many gluten-free foods have soy flour or soy protein.

check this first

and after you double check to make sure he is not being gluten in any way, consider is he reacting to a secondary intolerance.

I was about 8 months gluten free when other intolerances became an issue. Some common ones are soy,nightshades(potatoes,peppers,tomatoes ect..) ,corn and diary

Please keep us updated as to how he is doing

[charley2006]

check this first

and after you double check to make sure he is not being gluten in any way, consider is he reacting to a secondary intolerance.

I was about 8 months gluten free when other intolerances became an issue. Some common ones are soy,nightshades(potatoes,peppers,tomatoes ect..) ,corn and diary

Please keep us updated as to how he is doing

Hi and thanks for the replies.

We have tried to think of things that could of made him so poorly.

We follow a gluteen free book that is used in the UK (from the cealiac society here) and everytime i pick up a product that is listed in the book, i stll double check all ingredients in it to be completly sure.

I am just so worried now and hope we can get to his appointment in London without him being so ill.

To me, its as if he has a build up then vomits and is in pain. I will call emergency services if things get to bad in the night.

The doctor did warn us that he could have a secondery intolerence and that this was not unusual. Its just the waitin i hate and he has lost alot of weight in the space of just a few weeks.

[cassP]

ya, i was thinking additional intolerances as well. i have them, and i dont know why im still testing them- i guess because i really love to eat

this week i cheated and had corn chips.. and last night i had 3 pieces of Rudi's gluten-free bread.... and this morning ive got the "rocks in my abdomen" feeling... similar to gluten but not as bad... i honestly know my body does not like corn and potato and excess starch... im gonna have to crack down

also- now, some people are completely fine- (we're all different)- but i cannot tolerate HIGH FRUCTOSE foods. in fact- a couple of pears could put me in more pain than gluten

hope you figure his issues out

[mommida]

My daughter was diagnosed as "probable" Celiac Disease when she was about 16 months old. All was well on the gluten free diet until she was 6. Then symptoms started that seemed just like she was getting gluten from somewhere, but definately getting worse. There is a list of "suspects" for these symptoms. I am not a doctor and this was over 2 years ago, so from memory....

H. Ployri.

ulcer

hernia

congenital defect

unhealed damage from Celiac

abdominal migraine (actual headache pain was present too)

additional allergy testing

parasites

Eosinophil Gastro. tract disorder (This is "newer" and you might need to ask to make sure this is being tested for)

I can't remember the rest of the possibilities.

Although some of these situations may be diagnosed through non-invasive testing, most likely an endoscopy with biopsy may be needed to find out what is going on.

Please remember that, some kids have ear infections and only complain about a stomach ache and vomit. Write down all symptoms so you can remember for your appointment time. At this point it is very important that his symptoms are not just dismissed as Celiac, especially because you are probably very strictly following a gluten free diet and that should not be the cause of these new symptoms. Keep an open mind and make sure you are working with a doctor who listens to you and you have confidence in.

My daughter was diagnosed with Eosinophillic Esophagitus in addition to Celiac.

Good luck.

[T.H.]

Oh goodness, hon, so sorry your little one is so ill right now!

Pretty much what everyone else said, plus:

- Keep a food journal. What he eats, what brand it is, what time he eats it, and how he's feeling. Because of the delayed nature of a lot of reactions, it is REALLY helpful to figure out what's going on if you have this.

- does he have more pain after or during peeing? Many celiacs/gluten intolerant folks are more prone to kidney stones. I know I ended up having a kidney stone for the first time in my life a few months after going gluten free. I understand it's not uncommon. Might be worth checking his reaction against that of a kidney stone.

- You might want to see if any of your gluten-free products contain hydrolyzed wheat. As I recall, that is still allowed on the UK gluten-free diet, but it isn't allowed in the American one. I have read posts from a few celiac folks in Europe who couldn't tolerate it, so it might be a good idea to take it out for a while.

- Also, is your son getting any gluten free oats or quinoa? A small percentage of celiacs react to oats, even gluten free oats, as though they were oats, rye, or barley. You can find literature on it if you google. Anecdotally, some celiacs report a similar reaction to quinoa, although I don't believe there have been any medical studies on that particular one.

- Do any of your products contain xanthan gum, guar gum, etc...? One can have a sensitivity to the gums that, if I remember right, result in stomach and intestinal irritation, usually. I don't know if it can pop up out of no where, but considering how many other food issues can start being problematic rather suddenly, I assume it can.

- You mentioned that his diet hasn't really changed, but has it changed amounts of any particular type of food? Because gluten free food is not actually zero gluten, but just 'really, really low gluten,' if your son is eating enough processed 'really, really low gluten' foods, he might be getting too much gluten now. Sort of like how one can eat too many low calorie foods and still not lose weight, ya know?

- The above might also apply to dairy. Many celiacs are lactose intolerant at first, because the damaged part of the intestines are the parts that digest dairy lactose. Dairy could be giving him an issue, now - it would explain the gassiness and pain, both.

- Also, if no answer can be found, you might want to look into fructose malabsorption, something that can develop in folks with other gut issues.

[ravenwoodglass]

- You might want to see if any of your gluten-free products contain hydrolyzed wheat. As I recall, that is still allowed on the UK gluten-free diet, but it isn't allowed in the American one. I have read posts from a few celiac folks in Europe who couldn't tolerate it, so it might be a good idea to take it out for a while.

- Also, is your son getting any gluten free oats or quinoa? A small percentage of celiacs react to oats, even gluten free oats, as though they were oats, rye, or barley. You can find literature on it if you google.

In additional also check for codex wheat starch in products. Most of do not tolerate it.