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Where To Begin?

Mamabean

By Mamabean
in Coping with Celiac Disease

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Mamabean Newbie
Mamabean
Posted

Wow, this is kind of exciting- my very first post ;)

I guess I should begin by saying that we're not dealing with celiac in my house. I don't suspect celiac in my house and at this point I won't be pursuing that avenue with our family Dr. What we *are dealing with is my 2 year old and his allergies. We went dairy free (for him, not for DH and I) and he's made remarkable improvements in so many ways. The problem lies in the improvements we haven't seen. His eyes are always red and puffy and watery and his BM's are just plain rotten. Messy and toxic. He often has gas (how IS it that such a little body can produce something so foul and forceful?!!) and despite not complaining I know that things are not right for my little guy.

So this leads me to where I'm at now. When I took DS to the Dr about the milk allergy he mentioned that wheat would be the next likely culprit. A month later (just before Xmas) we saw our regular family Dr and he avoided the wheat issue completely and suggested that DS's BM's are still within the range of normal. I nearly invited him to spend a weekend at my house to clean the dirty diapers and then make his diagnosis ;) I know in my gut that all is not well just yet. My mommy intuition is screaming at me and it's telling me that we've got a wheat issue on our hands.

My question is where do I even begin??? I cook fairly clean to begin with- I use mostly fresh ingredients and I don't use many processed foods aside from some sauces here and there. I am more than happy to change those sauces and chuck the crap in my fridge. I'm feeling a bit... overwhelmed? lost? about what to do next. Where do I get my hands on flour to make decent bread? How do I ensure that DS is not getting wheat or gluten loaded foods at preschool? (Obviously I talk to the teacher, but beyond that???) What considerations do I need to take because of his age?? I don't really feel like I have the full support of my family Dr on this issue, though I'm sure if I pushed enough he'd relent but both my husband and I feel like this would be a good choice for our family and will (hopefully) help improve some nagging issues he has and contribute to a healthier lifestyle for all of us.

I'm looking for some guidance and some suggestions. Any help would be appreciated. Any books or articles that you've found informative or helpful, or any personal experiences that you are willing to share will be accepted with open arms.

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mushroom Proficient
mushroom
Posted

Hi Mamabean, and welcome to the forum.

I am sorry that your wee guy is still having problems. I suppose the first question that comes to mind is why you are so sure you are not dealing with celiac. Has your son had celiac blood testing or an endoscopy that came up negative? While these can be grossly inaccurate in young children they are the first line of investigation usually. Were either of these negative? When you are talking about allergies, does he have an anaphylactic response to wheat or get a rash from coming in contact with it, or what makes you think he is allergic to wheat? And this is asked in the sense of differentiating between a true allergy and an autoimmune reaction, an intestinal intolerance, which is what celiac is. Celiac disease is when the body starts attacking itself, an autoimmune response to the gliadin in wheat, which destroys the lining of the small intestine and lets particles that are too large into the blood stream. The body then attacks these particles as foreign invaders - but you probably know all this anyway.

If you have celiac you are often also intolerant of dairy, because the enzymes to digest lactose in milk are made in the part of the small intestine that is damaged by gluten. Foul stool, as you probably know, is one of the distinguishing hallmarks of celiac disease. So I guess I want to know why you are convinced that it is a wheat issue rather than a gluten issue? Or have you decided to try going gluten free? It was not clear from your post, because usually one eats gluten free because one is intolerant of it, has an autoimmune response to it, whether celiac or not. Clarify this issue for us and we'll be able to help you a lot more :)

Mamabean Newbie
Mamabean
Posted
  • Author

Thanks for the welcome Mushroom :)

I will try to answer as thoroughly as possible without sounding gobbldy-gook LOL

So I'm not really sure that it's not celiac, I just kind of have a gut (no pun intended) feeling. I haven't had him tested because there isn't anyone where I live to do that sort of thing. We live in a very remote area and when the allergist does come here he's booked 6-12 months in advance. I also don't think that I have my Dr's support (but to be fair, I haven't approached him directly about this because I felt a bit like he was questioning me about the milk allergy which a month's worth of dairy free had prove was an issue) and I think it would take a lot of time and energy and fighting with him to get him around. The BM he saw at DS's appointment was 'normal' as far as he could tell but as I said- that's not normal and you or I would be doing something to change it!

As far as an allergy to wheat- I don't think it's necessarily an allergy and if it is, it's mild. We're certainly not dealing with anaphlaxis, which is a huge relief, but he did develop eczema from the milk along with various other problems including ADHD type symptoms which went away within a week of taking him off dairy. At this point I'm thinking (maybe hoping and trying to convince myself and denying the real issue haha) that it's an intollerance to wheat. I can't say why exactly, but that's what my heart and my head are telling me. Besides that- in a lot of the reading I've done there seems to be a link between wheat and psoriasis. DH has very pervasive psoriasis which is a major source of stress and lowered self esteem for him. It removing wheat helps clear that up for him then we've done a good thing. To add to that, my Dr has made it very clear that the fact DH has psoriasis puts DS at higher risk for developing allergies of all kinds.

I think the biggest clue for me is his BM's but also the red, puffy, watery eyes. He's bloated (but not overly) and gassy- but not all the time. All the clues point to wheat/gluten but given my lack of medical training I just can't be sure. I've pretty much decided at this point that if we eliminate wheat (though I'll probably go straight to eliminating all sources of gluten) and we see the changes that we need to see then that's all the proof I need. If after 6 months or so we try to re-intro some sources and we see reactions from him again then I'll pursue it with the Dr. I guess it boils down to knowing that there's an issue and I'm going to take it head on. If I start now and bring good evidence to the Dr then perhaps he'll be more likely to listen to my concerns and give them some weight rather than brushing it off and suggesting that I just continue as we are. If I can bring him some good, solid evidence (as I did with the milk) then not only will I have been able to help solve the issue months before the Dr would listen but I'll already be comfortable with the idea and the process.

lynnelise Apprentice
lynnelise
Posted

All the symptoms you describe can be caused by celiac or gluten intolerance. I would request at least the blood panel be done while your child is still consuming gluten. There is a fairly high chance of a false negative but on the chance it was positive it would make it easier for him at school if he was diagnosed. I would just tell the doctor that you want him tested. If the doctor says he doesn't need the test, just insist that you'd feel better if he ran it. In my experience doctor's will usually agree to test you as long as the insurance will pay for it. If he is having gas, pain, and foul stools then that should be all the justification he needs.

mamaw Community Regular
mamaw
Posted

there is also the online testing kits.......I agree with the other posters that you should get some testing done. when your child starts school they will need some documentation....it will make yours & your child's life much easier. Has your psorasis suffer ever thought of going gluten free? of course no cure but it does help on the gluten-free diet.

At least speak to you doctor there is a great chance he/she knows nothing about celiac or sensitivity so that may be why the doc never mentioned it...most doctors have no clue....

I hope you get to the bottom of your child's health issues...

Just a note: just because a product states wheat free does not make it gluten free--- If a product is gluten free then it is wheat free.

blessings

mushroom Proficient
mushroom
Posted

If I were you I would insist on the blood testing before taking him gluten free. That way you don't have to re-gluten him for two months if you later decide you want an official diagnosis. No way of knowing whether the tests would be positive or negative, but I do think you should give it a try, and the full celiac panel including DGP, and not just the tTG which doctors love to do.

Mamabean Newbie
Mamabean
Posted
  • Author

If I were you I would insist on the blood testing before taking him gluten free. That way you don't have to re-gluten him for two months if you later decide you want an official diagnosis. No way of knowing whether the tests would be positive or negative, but I do think you should give it a try, and the full celiac panel including DGP, and not just the tTG which doctors love to do.

Thanks for the replies :) I guess you've left me with no other choice than to take the matter on with our GP, huh? Thanks for the push though. I think my biggest concern there is that he's going to poo-pooh my concerns and make me fight for what I want and I don't really want to have to fight with him.

At least this will give me a bit more time to get myself sorted out and to figure out how exactly this is going to look for our family. Cutting out dairy was really overwhelming at first but after I got the basics down (and muddled through the Christmas holidays with the IL's here sabataging everything we'd worked so hard for in the month prior) it wasn't so bad. I managed to find alternative recipes for everything that we usually have for Xmas dinner and I have found simple ways of changing recipes to suit DS's needs. I suspect wheat free would be more challenging and gluten free even more so and I'm going to make the very most of the time I have before we make that change- regardless of what the tests say. In the mean time I've got a team of people just chomping at the bit to hand over books and hard earned knowledge and I'm happy about that. I've been talking to a dietician about my own diet etc. and I suspect she'll be quite happy (with a bit of a fight there too) to cooperate and hand over some good info once I convince her that this is a change we'll be making and won't be swayed on.

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