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Thursday, April 12, 2012

Thank You! Thank You! Thank You!

Y'all, I need to heap barrels and barrels of thanks upon everyone with knowledge of gluten-intolerance and/or Celiac who emailed me or commented, sharing their wisdom and experiences.  I cannot thank you enough.  I wish I had time to email everyone personally, but - to be completely honest - I don't even have time to go to the bathroom by myself right now, so something's gotta give.  Just know that I am reading your comments and emails late at night, after everyone else is asleep, and soaking it all in.

(And to all y'all who are like "Celiac whaaatt?," can I just say thanks for sticking around and supporting us as we navigate and obsess.) 

Yes, we plan to go gluten-free and possibly dairy-free (although definitely lactose-free) no matter the outcome of the diagnostic tests.  I see a difference as a mom, and that's good enough for me.  (For those who know little about Celiac, a negative result at Squirt's age may not necessarily mean she doesn't have Celiac. Most affected children are not diagnosed until ages 4 to 7, if not later.  Yes, they have symptoms as infants and toddlers, but it's usually not possible to receive a positive diagnosis until significant damage occurs over a sustained period of time. Plus, you can be gluten-intolerant without having Celiac.  There's no test for gluten-intolerance, just a change your diet and see what happens kind of thing.)  But we plan to test despite knowing all of this because it's not simply that Squirt has digestive issues... it's also that she experienced not-quite-hypoglycemic-related seizures in December, and went from healthy to nearly septic in less than four days back in August, not to mention the countless sinus infections she's experienced.  It could be that she's *just* gluten-intolerant, but it's also likely that it's something more... something auto-immune related.  Celiac seems the most likely choice. And goodness, y'all, with her history this past year, she might be one of the ones not even be able to touch gluten.  If that's the case, we need to know.

Playdough and chalk anyone?

The blood test is most often inconclusive, but it can rule out a small number of people.  So that's the first step.  We plan to then talk seriously about an endoscopy and genetic testing with her doctors.  I'm not sure what we'll choose (maybe both?), and I'd love to hear details from anyone willing to share, either in the comments or privately (my email is tonggumomma@gmail.com).  Any and all information is helpful at this point.  We may not follow your specific advice, as we plan to lean heavily on the doctors who know Squirt's medical history best.  But we WANT advice.  We want to know how other parents proceed in similar situations.

And yeah, Celiac is definitely do-able.  Yes, I think it's a steep learning curve in terms of learning to cook for the family.  My sulfite allergy and Squirt's possible legume allergy (which includes soy and peanuts) definitely complicates matters immensely.  I'm navigating multiple allergies at once now, so it's not as easy as it looks, especially since gluten-free products typically contain soy flour.  Plus, I can't buy products without bilingual or solely English labels because sulfites are often a hidden ingredient.  But I'll learn and we'll figure it out.  Recipes are welcome.  We may not be able to even try them due to other allergies, but I'd still love to see your favorites.

I'd also love to know your take on veggies.  For those of you with Celiac or who are gluten-intolerant, how do vegetables effect you?  A woman we know diagnosed with Crohn's Disease told me that those diagnosed with Celiac often shy away from veggies, preferring fresh fruit instead, because of digestive issues.  That's definitely our Squirt, but I thought it was just a toddler thing.  IS it just a toddler thing, or is there some truth to her statement?

I guess that's it.  That's all I've got, except for a heaping amount of love and affection for y'all.  I can't believe how y'all have reached out to me, and even stuck with me during a bad year of blogging.

Y'all?  Are amazing.

15 comments:

Desiree' said...

ok, I answer this ~ Having both wheat allergies, milk allergies and ulcertive colitis. I can eat well cooked veggies, but if they are not cooked and I eat them...stomach issues almost immediately. I do eat fresh fruit though~ can't do strawberries or anything with edible seeds though~
feel free to email if you have more questions

Aus said...

Well - miss a day miss a lot with the TM here!

Glad to have you back - missed you!!

And Squirt - lighten up babe - mom's need life too!

OK - a working DX - groovy! Lactose intolerance is nothing anymore - you can actually buy OTC in you local drug store diet supplements that provide that lactose enzyme that can be taken when you have dairy products...I've got 3 lactose intolerants in the house - and this stuff just rocks!! email if you want brand names!

As for gluten - well - I'm ignorant of that but I do know 1) That you are more intelligent than most, and 2) no stranger to allergices (meh!!) so I'm completely confident that you'll "get this".

And yeah - it was about the pee (well, and the poop too!)

And I'm glad to have you back (am I repeating myself?)

hugs - aus and co.

Casa Bicicleta said...

Oh my gosh TM. This is a whole lot you got to juggle here. I would be as overwhelmed as they come. I cannot imagine how you are dealing with this. How is the Togginator dealing with the changes in the diet, because I imagine it has to be a whole house thing, right?

Sending you tons of hugs. We almost had to go there and I was so relieved we didn't--- I feel like such a baby to remember all the whining I did about it. (hangs head in shame) hugs, hugs and more hugs

wish I could cook something for you

Debby said...

If your baby is super sensitive to gluten and can't even touch it, you would be wise to not buy processed foods. Everything fresh. I have not heard about the veggie problem you mentioned.
The hardest thing for me is the bread and pizza. I have found UDI the best. It is made in Denver but I can get it in Ohio. SOme celiac patients can't lick an envelope. Watch glue. Fruit snacks and even ketchup can have gluten in it. But this is all doable. I've had the upper endoscopies......unless she is ill, I wouldn't do that. As far as genetic testing......I don't know. There are so many symptons that go side by side....thyroid, fatigue, aching, diabetes.....so much. But again, this is doable. Being that she is so slittle, she won't feel like she is missing out on anything. Since there is just my Hubby and I, he eats what I eat. He really doesn't mind. He says he misses a real pizza. When we have family get togethers we get special things for my son and I. It's not bad at all.
Good luck. If you need anything.....just email me. grammypetals@yahoo.com

Ann S. said...

My Mom is gluten intolerant and I was diagnosed with Crohn's (though not an active case now). Lipsticks and makeup also have gluten. If you use it and kiss the babies, it may cause symptoms. There's a website for gf makeup. Raw veggies are really a no-go for me - they are just hard on my system. Cooked is fine (except for cabbage and spinach). No salads for me, either. Bananas, apples, grapes, pears, small citrus (clementines) all work for me.

Jamey... said...

That's interesting about not being diagnosed until 4 or 7...it could for us explain why Pickle has so many symptoms, but tested negative. We did his endoscopy at Hopkins so if you have any questions about that that I could help with you know where to find me. :)

Krista said...

We've been dealing with different food allergies for 8 years (me, much longer, but I didn't know that was my problem until I cut out what I could see was causing my son problems). Now that my two youngest seem to have gluten issues, I've been researching and we are on the GAPs diet. It's intense, but heals the gut from the problems it has and doesn't last forever. Another option is the SCD diet. It's a lot all at once, but there are lots of resources and other blogs that moms can help with.

Anonymous said...

I thought you might be interested in this blog resource. I've linked to one particular article that you might find interesting. Good luck.

http://nourishedkitchen.com/homemade-bouillon-portable-soup/

kristen [rage against the minivan] said...

There's a learning curve, but now that we're nearly a year in, we've really gotten in a groove and things are pretty easy. And I feel SO much better. I hope you see some great changes in your kids!

The Byrd's Nest said...

Isn't God so amazing how He places just the right people in your life that have already gone down the path that you are venturing out on? I love that about Him...I really do:)

Anonymous said...

TongguMamma, just a thought - as part of the celiac testing have her checked for selective IgA deficiency. It is a relatively common but often missed condition and is associated with sprue. From PubMed -
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002447/
Best of luck and health.

Patricia/NYC said...

Oooh, TM, we've been away & I am just getting caught up with blogs right now...wow, I had no idea you were going through so much!!

I have no experience with Celiac, other than one of my good friends having it, so I can't add anything to this already knowledgable bunch of commentors. But, I CAN lift you all up in prayer & send out virtual HUGS!!!!!

Keep us posted!! We are all praying & hoping for the absolute best for all of yoU!!

Yvonne said...

I am gluten and dairy intolerant and one of the best baking cookbooks I've found (it also excludes the most common 8 allergens, including soy, wheat, dairy, and peanuts) is Cybele Pascal's "The Allergen-Free Baker's Handbook." Good luck! And it is doable - just takes some more time and effort until you get it all figured out. Glad you have a possible diagnosis - it changed my health dramatically and hope that is really turns things around for your daughter.

Anonymous said...

TM, With my newly diagnosed thyroid issue they are suggesting I go gluten free again. I was gluten free for years because I am actually allergic (I just have a hard time because I love bread). AJ was GFCF for years so I can help you with it all. soaps, detergents, even things like marinades have gluten in it. It can be hard.

As far as me...I have no trouble with veggies but things like vinegar give me issues.
Pickel

Anonymous said...

Hi, TM,
thebettermom.com website may be a great resource for you. There is a woman who does meal planning menus with links to the recipes. She has a gluten free menu and also many recipes with GF options. It is from scratch so I think that may also address your sulfite issues? Look at the task bar across the top, it either says food or meal planning, can't remember which!
Susie