Aly1

That's so awesome, you can really start living again!

Yes, I've been reading along on this post and I would also love to read that thesis!

Thanks so much MitziG for your reply - I can't believe your son says that to you!! That would kill me. I do feel so much guilt because her symptoms are vague and easily Not related to gluten. But gluten has made me so sick for much of my adult life, and I lost the last 10 years of my life going undiagnosed (like many people here!) and can't bear to just wait and see if it manifests itself in her. But the first thing my mom says after the test today was "why is she being tested for celiac??". A couple of weeks ago when I mentioned I was going to take her gluten-free she said "why would you want to do that to her??".

Half the time I really doubt myself, like I'm being a hypochondriac on my daughter's behalf. She's in the 5th percentile for height and weight but always has been so maybe she's just little. She had beautiful rosie cheeks until she started solids, and has been pasty pale ever since, with dark circles under eyes all the time. She shares my blood sugar problem and already we know we have to feed her by a set schedule or she melts down - just like me. She just seems so much like me physically and since I was a tiny, pale child with no other symptoms, I fear she may have the gluten issue like me. It took half a lifetime for me to figure out my health issues and a lot of damage had been done. I just want to (theoretically) spare her from what I've been through. I just hope that I'm not putting all my paranoia on to her and torturing her with traumatic tests for no good reason.

Anyway I guess that was a bit of a vent, I was feeling bad about how the blood test went and my mom just compounded it. Thanks for "listening"!

Ugh that is so frustrating, why not order a simple celiac panel just to cover all the bases? Are you just going to go gluten-free now and give up on the testing? I personally tested negative despite a big correlation between gluten and my symptoms. I've decided to pursue genetic testing so I can at least have that part of the puzzle clear...but for me a DX is important. I've spend so many years going from doc to doc and being doubted by both them and a lot of family members, so I really feel a need to know all that I can. I guess that's what you'll have to decide for you now - go back on gluten until the testing and feel lousy till then, or just let that go and feel better now...

What does it mean to say a company has spammed the forum? Not that I want to linger on the subject bc I don't want to hijack someone's thread...

Wow, I can't believe my freedom of speech was just violated (yes that's being dramatic ) I don't think it's right to remove a company from a post because you don't like their business practices, it's a little offensive. So in protest I will leave a hint about the company because the point of these forums is to HELP one another by providing useful information! The site starts with an A, ends with an N and has a Z in the middle. Hope you are familiar enough with the name that you get it. And hope I don't find myself deleted for doing that but I think the practice of wiping out the company name in my comment - a legitimate well-known company that could provide a useful service to gluten-free people in need - is pretty offensive.

You mention that you live in a small town that maybe won't have all the gluten-free products you're looking for. Just an FYI that (Company Name Removed - They Spammed This Forum and are Banned) carries a lot of gluten-free things and often in bulk so you can save money on the things you know you like. Good luck!

Thanks so much for the advice and information - it definitely came in handy as he was just going to do the standard tests which did not include the ttg one and another one you listed.

It was so hard to hold my little girl while this woman took her blood - I remember that same woman taking my blood last year and it was one of the worst I've ever had (and believe me I've had plenty!). So I had to hold her down while she cried and begged "mommy mommy!!" over and over again. We are both thoroughly traumatized. What sucks is no doubt these tests will all come back negative - mine did - and she will go gluten-free anyway. But I had to give her the chance at being dx'd now while she's on gluten. IF she does have a problem with it this will be all worth it, but man it was rough on us both .

Thanks for the advice!

What specific tests should I make sure she gets done?

I personally am having my daughter go gluten-free for the first few years of her life, just to be safe. The only childhood symptom I had was "growing pains" in my legs that were pretty bad. Gluten has all but ruined my adult life - I am in a wheelchair thanks to it - and I see my daughter who takes after me in so many ways... I am already gluten-free and I think until she's 5 or so we'll keep her mostly gluten-free till then. I say mostly because I don't want her to miss out on holiday treats etc without being sure there's a reason to. I figure by that age she'll be better able to verbalize what's happening to her. I guess I just don't want to theoretically gluten her for years so I'm not taking any chances. We are getting testing done first (she's not gluten-free just yet) and then just soon it regardless of test results. Mine were negative, but in my case that's irrelevant!

This is something I'd intended to research myself but we've all been sick here and now I'm out of time.

Tomorrow morning at 10 I have an appointment with my 2.5 year old daughter's pediatrician and I want to ask for her to be tested. This ped is young and I anticipate he'll be totally clueless about celiac and gluten intolerance. I need to know what to ask for test-wise, to make sure she is fully tested before we attempt a gluten-free diet with her.

Also, if you have any advice on how best to approach the topic with him I'd appreciate that too. He is a nice guy and doesn't seem to have a big ego so I think he'll hear me out. (I tested negative for celiac but appear to have peripheral neuropathy due to gluten intolerance. I am long accustomed to docs not believing me so I'm a bit insecure about dealing with this doc tomorrow...would be easier if I could say I was diagnosed with celiac, but that would be lying...)

Last question: Might he be willing to do gene testing right off the bat? I don't want her to be needled twice and would like that information about her...)

Thanks for any-last minute replies!

That's a very helpful post, thanks!

And we are finishing our last loaf of ww bread for our little girl. Then I just won't buy anymore! Hoping to get her tested ASAP and then have her go gluten-free too...

He is a typical guy who wants to "fix" me, and when he can't, he gets frustrated. I honesty don't blame him for the cases at home where I've been glutened; as I said he prepares what I say I can eat and how...I just have had a lousy learning curve as of late. I have to be the one to take responsibility for the ingredients we have; I am the one doing the researching and the one with the problem. He works all day and then has to cook when he's tired and not so focused. For example, he used baking soda that had been processed alongside wheat. If I had checked all the ingredients we had beforehand, I would have stopped him and he would have been glad I discovered it. We're a team on this but ultimately the responsibility is mine. It will be easier now that he is going gluten-free. Hope he stays that way!

You are probably right that I will have to give up on my desire to create baked things I can eat - but I'm no ready to throw in the towel just yet. I figure, two more attempts before I throw in the towel...!

Oh, and thanks for mentioning Thai rice noodles - he will like that and we hadnt considered them

Oh. I know I should be sticking to whole foods, I do - its just that I am losing so much weight and have not been able to eat meat for breakfast, it's gross to me (and we are seriously broke). I just an trying to find some flour that I don't react to so I can make muffins etc to add to my rotation and help me gain a bit of weight. I got some good advice here in that regard and brought some home last night, so fingers crossed on this next attempt!

Thanks for your replies, I didn't have the energy to respond yesterday. Most of the time when hubby glutens me it's been of my own doing eg. because I've chosen a product without investigating all the ingredients. I've learned that Big Time this month, I have to be more careful. The only thing he's done that I question was cook my dinner right beside a couple of cans of pumpkin that were dusty with flour (from the store). But he is learning and will do whatever needs to be done, he's just that kind of guy.

My other area of issue - probably a bigger one - is having a toddler who I give bread etc to. I really didn't think it was a big deal till yesterday when I handled her bread an a mi it's later realized I was resting my chin in my hands so my fingers were right by my mouth - duh. We are going to see about getting her tested and then get her gluten-free too.

The good thing is Hubby is going gluten-free starting today! He has episodes of food-related digestive issues and finally decided to do a one month gluten-free trial. It would be nice if we just had a gluten-free household, things would be so much simpler.

It was good to be able to come here and vent. I know logically that I can't expect my husband to share all my interests (esp when this one is all about me!) but it still stings. I will just have to spend more time on this board. And as I feel better I'm sure I will have more energy to develop other interests! That is just a dream now. All my spare energy goes toward my toddler and trying to keep my place clean. But I have a list of things I want to do when I'm well enough! Hopefully before I'm eighty!!

That's very interesting - plantar fasciitis was my first symptom, before everything else went wrong. Not to freak you out but ithe pain (and then nerve) symptoms moved up my legs, into my thighs to my waist and I ultimately ended up in a wheelchair. Have been in one for 6 years now but was just diagnosed with gluten and other problems and my doc is hopeful it will resolve and I will be walking again and some point.

My advise is to stretch lots - PF can be caused by tight calf and Achilles tendon muscles - and don't push past the pain. I got frustrated and decided to ignore it so I could get my housework etc done, and that's what triggered mine to move up into my legs. Good luck, you have my sympathy, foot pain dominated my thoughts for so long so I know exactly what it's like.

No, that's not the answer i wanted to hear, I want quick easy nutritious gluten-free foods that I enjoy eating. But I appreciate the replies.

I will get a probiotic, it can only help! Thanks

I could have written your post, I am in the exact same situation. Except hat currently I don't have medical insurance so I can't do anything right now anyway.

I think I will get tested - even though the results can't point to anything definitive, it's one more piece of the puzzle, and to me, the more pieces, the better.

I am feeling really low today. I have been glutened repeatedly the past 3 weeks (most recently last night at my in-laws) and am so weak and tired and fed up. Every new food product I try produces symptoms, and we are trying so hard to find things I can eat safely other than just meat and veggies and brown rice, but fail each time. I want to quit but as we all know that isn't really an option!

Now my hubby has indicated he's sick of hearing about gluten gluten gluten and would like me to talk about something else. I can't even mention it now without sensing he doesn't want to hear it. It makes me feel so alone, I have no one in my life who really understands how this has affected me. He gets it but is sick of it dominating our lives. Me too!! And if I was being successful on this diet and feeling good then maybe it could move to the back seat a bit, but the fact is I feel horrible every hour of every day, so if I only mention it once or twice a day then I'm actually doing pretty well.

Are the people in your lives sick of it too? I don't want vilify my husband here - he makes all the meals because I'm too ill to do so, has bent over backwards trying to make gluten-free muffins and other things for me - he just (understandably!) finds this process frustrating and doesn't want to hear about it all the time. He has however been there for me through years of disability and illness so who can fault him? Meanwhile I am researching and reading tons and learning so much but can't share with my best friend.

I just needed to vent here to a group of people here who get what I'm going through. I have never really introduced myself or told my story but I feel like I've gotten to know many of you through your posts. Thanks for listening!

I'm just curious what her symptoms are? As a previous poster said, there's hardly a system in the body that gluten can't touch...and with all her food allergies, it would hardly seem surprising to add gluten to the list.

Oh okay so I am clueless in a different way :oD. But - are there tests that show plain gluten intolerance?

And i voted Negative. I tested negative and get So Sick on gluten.

I am a little confused by this poll, so maybe someone will educate the newbie! (Or maybe it's just my brain fog, I am out of it this am!). I thought that there are 2 conditions - celiac and gluten intolerance (well, wheat allergy too, but that's irrelevant here) that fall under an umbrella term of gluten sensitivity. I thought that it's possible to have false negatives for celiac (which is gluten damage specific to the intestines) but that gluten intolerance (non-celiac reactions to gluten) do not show up on tests. Is that incorrect? I tested negative for celiac (bloods only) so I believe that, unless my test was a false negative, I therefore fall into the gluten intolerant category. Do I have it wrong somewhere?

I don't know if I'll even get a reply to this one because I'm so sensitive right now that maybe there just isn't anything out there that's processed that I can have! I eat mostly whole foods but need some processed stuff to fill in the gaps. I'm relatively new to gluten-free and am discovering I am sensitive to so many things. I want to find flours (I already have some leads there), muffin mixes, anything that would make either a great breakfast food or snack food to add in between meals (trying to gain weight).

Problem is I also have issues with:

Oats cc

Eggs

Corn

almonds (maybe all tree nuts? I am not up to challenging those yet to see)

Sugar / sweeteners

I am also avoiding dairy though my only "reaction" is to get very bumpy on the backs of my arms. So I am a little flexible on that one.)

I thought maybe here on the Sensitive board some of you might know some tried-and-true gluten-free products I could try. If there are any, given my list above! I am tired of picking products that end up making me sick.

Thanks for these replies! I will give them a try.