kaylee

Hi,

Your daughter is clearly in good hands with such an attentive mom. I know that doesn't help the situation, but it needs to be said!

I don't know enough to be able to tell you if a firm diagnosis is possible at such a young age, so I won't go there at all. I'll just add my experience, which was that my son was VERY irritable from very early on and had progressively worsening and more frequent screaming fits that just seemed to appear out of nowhere. His sleeping also got worse instead of better with time. To cut a long story short, after eliminating everything I could think of, I finally thought to eliminate wheat (and dairy) and ALL the screaming and irritability evaporated within a week.

I find your pediatrician's response unhelpful, even if she may be right about not diagnosing celiac disease per se at this young age. The problems with your daughter may or may not be transitory, but I know how worrisome it is to see the distress and not know what, if anything in particular, you should be doing.

Keeping your daughter gluten free for now is probably a very good idea if you are seeing improvement and if there is a family history of celiac disease. Make sure you as a breastfeeding mom are getting enough vitamins with everything you're eliminating from your own diet! And, let us know how things develop after you've been off gluten for a bit longer.

Best,

Kaylee

My little guy clearly had headaches although he was too young to say so (went gluten free at 16 months). He used to rub his hands across the top of his head and forward and make long blinks that were not normal. This hasn't happened once since he has been gluten free!

Best,

Kaylee

Laura,

I have no idea whether this could be the case for you, but with my son the longer he has been on the gluten-free diet, the smaller the amount of gluten accidentally ingested it takes to have a reaction. Actually, not only does it take less in quantity (because now just trace amounts are enough) to cause a severe reaction, but his reactions are now worse with quite an acute initial phase, and generally last about a week. I have heard about this phenomenon from a number of people, so it

Hi and welcome,

I can relate to the Bread Issue! Bread has always been a big part of my enjoyment of food, too, and finding a really good replacement, gluten free, looks like it's going to be a bit of a challenge. Still, I have good hopes about finding something even if it takes a while and a lot of experimentation. What I have found so far is that the gluten-free bread is too rich for my liking, so that"s what I'm working on. The question for you is, what do YOU like in a bread? People's tastes vary a lot. It's hard to give you a recipe without knowing something about what you like!

Best,

Kaylee

I am currently in the process of weaning my 19-month-old toddler with celiac. He, too, as in the previous post, was incredibly irritable almost from birth. And, unlike what kept being said, he did NOT grow out of it.

Looking back, two things stand out: first, the lack of help from the pediatrician was quite extraordinary, really. I went to her a number of times very distressed for not understanding my son's virtually constant bad mood and progressively worsening bouts of screaming after we introduced solids. Her systematic response was that he was teething and that babies cry. She clearly took me for a highly neurotic, fussing first-time mother (She finally agreed there was a problem when he reached about 15 months, and suggested acid reflux medication, which helped a bit with the screaming).

The other thing is, that unlike you, Connie, I did not think to eliminate gluten, but I did try eliminating just about everything else. How did I miss it?? That's like what we hear about craving what's worst for us in food allergies. I stopped dairy, soy, oranges, peanut butter, caffeine, and various other things and saw strictly zero change in his symptoms.

When it finally dawned on me that we should try eliminating wheat and we saw immediate spectacular change, it still took me a few days to realize I had to stop it too. Now that we've both been gluten free my son is almost constantly happy - a pure delight to be around. This changes dramatically with ingestion of the slightest trace of gluten now - including when I have it and it passes through the breastmilk. I made a real mistake last week and ate some (well, quite a bit, I'm afraid) dried pineapple rings. We paid for that for a good five days of nonstop whining. Dried fruit I think is often dusted with wheat. I just thought, and I will no longer "just think" this, that the amounts present would be so small that once metabolized through me they would be inoffensive. So much for that idea....

I don't know yet if I have celiac myself. I have a number of symptoms and related conditions, but I've been off gluten for several months now and can't be tested until I've stopped breastfeeding and gone back to eating gluten for the 6 weeks required. In the meantime, we all feel pretty good on this diet and I don't regret this prolonged breastfeeding experience at all. My son went through the wringer with what I now know was constant pain for months and the close contact has been a beautiful part of our relationship. If the breastfeeding while eating gluten was a bad thing - well, obviously I feel badly about that, but I didn"t realize, no one else realized including the doctor, and I guess I'm mainly just glad that we did figure out the problem quite early on, that we went through several months but not years of unexplained symptoms.

Wow, that feels good to say all that!

Best,

Kaylee

So, here is the waffle recipe I am using. It's a recipe I found I cannot remember where that I changed around. It was originally based on amaranth flour, which I have never actually used. Point being, you could obviously transform it further to suit your needs and tastes. It could undoubtedly be used for pancakes, too (maybe adding more liquid).

Waffles (gluten/dairy/egg/soy/nut free)

Ingredients

1/2 cup brown (or white or half and half) rice flour

1/4 cup buckwheat flour

1/4 cup glutinous rice flour

1/3 cup arrowroot powder

1/4 cup brown sugar

4 tsp baking powder

1/4 tsp salt

1 tbsp or so flax meal (optional, but nice if you like that sort of thing - I add flax to

everything now)

3/4 cup liquid (I use a mix of water and apple juice. Pear juice is supposed to

be easily digestible I think and white grape juice was suggested in a

previous post. Plain water would be fine of course but would take

away from the crispy sweetness of the waffles I expect)

4 tsp oil

Mix dry ingredients well then add in water mixed with oil. Combine ingredients but don't overstir. Pour onto hot waffle maker. These take a bit longer to make than traditional waffles - probably a few extra minutes. Try not to peek before they're done. Wait until the steam stops pouring out. You'll have a better sense of how long they need the second time round. Serve with jam, honey, maple syrup or nothing at all (the juice gives great flavour)

Leftovers can be frozen, briefly microwaved, then toasted.

Note: I know some are wary about buckwheat flour, but my son who has severe reactions to gluten has never had a problem with it. The buckwheat flour could just be replaced by more rice flour, or some other kind for added interest.

Hope this is of use to you,

Kaylee

browsing around, i saw that your daughter cannot in fact have almonds.

I have a good gluten/dairy/egg/soy/peanut free recipe for waffles which I can post later. I had never made a waffle in my life until we discovered celiac and I realized I was going to have to change a lot of my assumptions about eating. So, one thing I did was to purchase a waffle iron and I've been making them once a week for breakfast. They're kind of special and my son immediately points and calls out "waffles!" (or, a toddler rendition of that that sounds more like "wall!") when he sees me getting ready to make them.

Best,

Kaylee

Hi,

my son is also off dairy and soy and can only have egg yolk not the whites, so I really know where you're coming from and can relate to the desire to be able to give your child treats that won't be harmful.

What about tree nuts for your daughter? Can she have almonds, for example? If yes, then I have a couple of nice (not absolutely fabulous, but good) gluten/dairy/egg/soy (and peanut) free recipes I could post that I have been using for my toddler.

Best,

Kaylee

Hi againn,

I'm not familiar with the blood test results you have but agree that they don't look like the ones for results for the celiac blood panel.

A friendly suggestion, since you seem to want to be clear about whether or not you have celiac disease, is to get yourself tested straight away before being on your gluten free diet much longer (and preferably go back to consuming gluten if it doesn't make you feel too sick until you can get the test done). The reason for this is, first, that generally it is considered important to be consuming gluten to get the most accurate blood test results and, second, the longer you're off gluten the greater the risk you will find it hard to go back on it if it is indeed causing the trouble.

I am assuming that the tests for celiac disease are the same in the UK as in North America. In case you haven't already tracked down this info: to get the clearest answer with blood tests the following should be done:

- antigliadin IgA and IgG

- total IgA (to see if you're IgA deficient, in which case AGA IgA would be meaningless)

- anti-tissue transglutaminase (anti-tTG)

Results from these tests aren't considered perfect, but they're a good start. The main thing is - if you're interested, don't wait!

Best,

kaylee

Hi Craig,

I would have to go with what's already been said and wonder why if you know you're allergic to certain things and are having such digestive distress you wouldn't try a bit - or even a lot - longer to see results with removing them from your diet.

You didn't mention whether the supplements you are taking are helping much ... you also didn't speculate as to how successfully you had eliminated gluten when you did go off it for a month. As many posts here can attest, unless you go for a very strict elimination diet, it can be hard to get the hang of things at the beginning, and to trace and remove all gluten from what you eat. If you had missed something you were having frequently that might explain why your symptoms didn't change much.

The other thing I wasn't clear about was whether you had had full blood testing done for celiac disease?

Best,

Kaylee

Hi all,

just feel like saying out loud in print that we got the gene test results back yesterday evening and our son does indeed have the main celiac gene. Rats. I had just about persuaded myself he was going to have a short lived sensitivity to wheat that he would outgrow soon enough. But, with his symptoms, his almost unbelievable transformation on the gluten-free diet, his terrible reactions to accidental gluten intake since going gluten free, and now this DQ 2 gene business I think I'm putting 2 and 2 together and getting that this looks like probable celiac. Sigh. Could still not be it in theory, of course, but there's no way I'm putting him back on gluten to find out! He'll have to make the decision to do so later on if he wants to. My husband will be doing his blood work next week. Glad I have the weekend to digest this news.

Best,

Kaylee

wow, thanks for the recipe!

So far I haven't invested in an actual cookbook. I guess that's been part of my way of just easing myself into this new way of life ...

I will give this recipe a try as soon as I get myself organized enough to get the new flour. I hope it works out, as I have been finding the regular gluten-free bread I make too rich with the eggs - too rich for regular eating, in any case.

Thanks again.

Kaylee

I haven't seen the book you mentioned but it looks like it would be worth checking out. I sniffed around a bit to find out about the 4 flour mix, and see it uses sorghum and garfava flours - both which I have never actually seen. That doesn't mean I can't figure out how to get hold of them.

I am hoping my son will grow out of the egg white and dairy problems with time, but for the moment they just have to be worked with. I have found a lot of recipes on the internet for gluten free baking, but most of the gluten-free bread recipes I have turned up so far do seem to require whole eggs. The recipe I am using for me I think is great. It uses half brown rice and half chick pea flour and the taste really is very good (for me! I know tastes vary considerably!). I am going to experiment next by altering the egg requirement without touching the dry milk requirement, then vice versa, to try to pinpoint the problem.

I appreciate your remarks about the bread machine. It really sounds like you've gotten yourself into an effective and happy routine and that is of course what I'm aiming for. I just purchased this machine recently, though, before I found out about problems with gluten-free flours and whatnot, and frankly I hate to just box it away so soon! If it turns out I can't produce a decent egg free, dairy free AND gluten free bread, I will use the machine for myself and start making my son's bread by hand. I haven't tried the soy baby formula but will definitely keep it in mind for my experiments.

Thanks for your time,

Kaylee

I join with the others in their encouragement.

Also, I'm sure you've double checked everything - but just in case, and since it can be so very easy to forget to check the one thing you use the most routinely - did you make sure the vitamins are gluten free? I was really shocked the first time we had a gluten accident with our son due to a regular medication we had used previously and didn't even think of checking (and, gluten wasn't even mentioned on the list of ingredients. It was only when we called the manufacturer to be sure it *couldn't* be that product that had caused such an incredibly severe reaction that we were told it did in fact contain a small amount of gluten - not enough to be required to be written on the label, I guess, but that's another topic!). As the body starts to get used to being gluten free - if this has been the problem, of course - then often smaller and smaller amounts can have an effect.

The other thing to verify would be the fries, if they're store bought ...

Best,

Kaylee

A number of people I know swear by evening primrose oil, which is taken as a dietary supplement. I'm not sure about how appropriate it would be for a small child, and if appropriate what dose should be used for dry skin problems. Still, it doesn't hurt to try and find out. I will poke around and see or maybe someone else knows.

Best,

Kaylee

Kayleen,

First, are you being followed by someone who is helpful to you (doctor, nurse, nutritionist, naturopath etc)? Reading about your current experiences makes me hope you have gotten or are getting some one-on-one help.

In addition to the above suggestions about cooking your foods well and needing to experiment to see what works for you as we are all different, I would just emphasize going with plain and simple. Try the kinds of things given to babies until you start to feel better. Recommended for lots of vitamins and (generally) easy digestion are: bananas (not apple!), sweet potato, squash, avocado, chicken (if you eat meat) and, of course, rice (keeping in mind the question about fruit sugars mentioned by TravelThomas).

Best,

Kaylee

Yes - the more input the better! And, the more I read the more it appears that there is no one description of someone with celiac disease. That must also be why there are such varying suggestions from the technical and medical professions about how much gluten is sufficient for valid test results. Like you, Jala, my husband had decided to do 5 weeks (which, in his case, was a crafty compromise between the 4 and 6 week suggestions he'd heard - but still pretty arbitrary), and that may just not be good enough from what others have experienced. Obviously, a personal decision has ti be made at some point!

Best,

Kaylee

Thanks for your replies! It hadn't even crossed my mind that the almonds could be interfering in the rising process. Halving the recipe is a good idea (why didn't I think of that??)

What are your thoughts on soy flour or potato flakes for replacing the dry milk? Now that I think of it for that matter, what exactly ARE potato flakes?

kaylee

Hi,

I think everyone must wonder about this question - it's such a seemingly simple treatment for often a whole host of problems. And, in reading previous answers to this question as mentioned above it quickly becomes evident that the gluten-free diet treatment works almost immediate wonders for some people, takes a lot longer for others, and is only part of a solution to what turns out to be more than one problem (frequently people with celiac find out they also have other food intolerances/allergies).

As many people have said in other posts, you might consider going for a dairy-free spell as well, at least for a while at the beginning while your body works things out. Taking things more simply foodwise for a while seems to agree with many people newly gluten free.

Best,

Kaylee

Hi Jen,

if your son is very small, pale, has tooth enamel loss and painful gas then looking into celiac disease is indeed a good idea as the others have suggested. Could I also add as a suggestion that you could put the time before the ped. visit to good use by keeping a food diary? Make notes on absolutely everything your son eats and also on anything that could be related - like mood (for example, irritability), physical things (the gas, but also trips to the toilet), tiredness, etc. Is his belly distended?

I found keeping this type of diary invcredibly useful when we first put our son on a gluten-free diet, but we were striking out sort of blindly, looking for answers without really knowing where we were going (it turned out to be a really good direction, though!). A diary might give you some extra info to give your pediatrician, too.

Best,

Kaylee

Thanks for your replies!

LisaB - Thanks for taking the time for a walk-through. That is thoughtful and appreciated.

Kaylee

Hi all,

I am hoping someone will be able to help with my bread baking problem. I am about to give up my attempts for now as I am, as we speak, in the middle of producing yet another failed loaf!

I made a number of really good loaves following one of Bette Hagman's basic recipes. The thing is, my son can have neither egg whites nor the dry milk powder called for. I have been following the recipe for her egg replacer bread, using 2 egg yolks and 5 teaspoons of egg replacer to make up the amount called for. I have tried using ground almonds to replace the milk powder, and I have gone out and bought fresh yeast. Whatever I've done so far (on my fourth attempt with slight variations) isn't working as the bread refuses steadfastly to rise. Since it rose perfectly when using eggs and milk powder in the basic recipe I know it isn't something wrong with my machine. I had already succesfully reduced the number of eggs in the basic recipe to one whole one plus 2 whites plus egg replacer to equal one egg. It is perhaps the change away from milk powder that is messing things up?

I have already wasted so many ingredients I hesitate to try again without advice!

Thanks for your ideas,

Kaylee

Hi,

this is probably very straightforward, but my technical skills are woefully behind the times ...

I've noticed that a number of people include links to information elsewhere on the web. I would be grateful to learn how to do this as I also have come across information from time to time that I think others might find interesting but haven't known how to do the fancy link inclusion.

Thanks,

Kaylee

Terence,

You mentioned that you saw a big change in symptoms when you switched from Synthroid to Levoxyl. My understanding is that Synthroid IS gluten free, no? SInce I also take it daily I am interested in that question, but also in what exactly you experienced in the way of symptom change with Levoxyl. Thanks.

Kaylee

Hi everyone,

I have already written in about my son, and now it's for my husband that I have questions (questions about me will undoubtedly come soon!)

My husband is going to get himself tested for celiac because after we all went gluten-free due to our son's need, he, my husband, was amazed to find how much better he felt after a week or so. His chronic and sometimes severe fatigue disappeared.

He was gluten free for 5 weeks in total. Now he has gone back to consuming it in order to have the blood work done and it has been 3 weeks so far.

My question is this: how long is long enough to be back on gluten for valid test results? I have read various things and at the least it is clear that there are individual differences, so this is not an exact science I know. I have heard 4-6 weeks mentioned, but it is not clear how long people have been gluten-free prior to that, to make those number of weeks necessary to be back on gluten, if you see what I mean. Since he was only gluten-free for 5 weeks, perhaps it is not necessary to draw the ordeal out? The bottom line is, although he hates being back on the stuff he is also concerned that the test results be as accurate as possible.

ANy insight would be highly appreciated. Thanks,

Kaylee