lc1333

i also have the hives issue when i get hot for any reason, it's called Cholinergic Urticaria, or an allergy to the heat that makes you break out in hives. i often break out in the morning as soon as i wake up, i'm not really sure why other than that it's an internal temperature shift. when i get hot from exercise, folding hot laundry, doing the dishes, taking too long of a hot shower or ANYTHING that raises my body temperature i break out in hives from head to toe. it is insanely painful and itchy and lasts for about 15 minutes, then the hives take about an hour to completely go away. the doc told me it is an autoimmune disorder. and it was because i have this autoimmune disorder that she initially suspected celiac when i went in with my list of complaint, since one autoimmune disorder can lead to another...

sorry for all your troubles, i hope you get some resolution soon, the gluten free diet has been a miracle for me, i never knew life with out GI issues was possible...

me at taco bell: gimme just a sec, i'm trying to figure out what i can eat...

girl behind the counter: oh, no problem, take your time

my sister in law: she just found out she has celiac disease, so she can't eat wheat

girl: oh, well she can have a soft taco with a tortilla, they're made out of flour, not wheat

me: yeah, but the flour is made out of wheat

girl: oh, really? that's interesting

my sister and i just look at each other...

thanks for the advice y'all.

i think i will just start calling to get him in earlier, maybe they'll just switch my daughter's appointment for him. that'll at least get him in first, in the middle of March. i just felt so horrible looking at him balled up on the couch and having to tell him, the doctor will call back monday, we just have to wait and see, i couldn't help him, it's such a horrible feeling, especially knowing we may have the answer and telling him that it could be the gluten, but he has to keep eating it.

and i also think i'm just gonna ask if their pediatrician can run the genetic testing, that's gotta go faster than waiting for weeks to see the GI doc. right?

and then to top it off, my 17 yr old son loves cheez its, so i bought him a box and two hours later i had to listen to him running up and down the stairs every ten minutes to go to the bathroom because he was soooo sick

it's like they're dropping like flies...but i can also look back in retrospect and see that this has been a family wide issue literally forever, so many things make sense now, we all get mouth ulcers, three of my four kids are in the 3rd - 4th percentile for weight, my other son is ALWAYS starving, thinks about nothing but food and when he can eat again, he's the only one that maintains a healthy weight, my youngest has no enamel on some of his (permanent) teeth, one has already been pulled, and he's only 10, all of them get sick if they drink soda (which of course isn't that bad!). i don't know, so many puzzle pieces just seem to fit together...

i'm ready to make my entire house gluten free, but i don't want to do it too soon and sabotage their testing...

so, here we go again with the docs. i had neg. bloodwork, but a positive biopsy, so i had to start the process of testing my 4 kids. they, too all had negative bloodwork, so their pediatrician referred them to a pediatric GI, starting with my daughter. her appointment is in the middle of March. meanwhile, my youngest (10 yrs old) is having stomach cramps bad enough to wake him in the middle of the night and keep him home from school, and he says they have been getting so much worse over the past couple of weeks. He's had this problem for many years, at 6 they told me he had colic, and then at about 8 they called it "nonspecific abdominal pains." None of them did any testing at all. I called the pediatrician today and the nurse called me back and told me the doc would read the status update and call me back on monday with some suggestions, but in the meanwhile, "cut back on his gluten intake for the weekend and see if it helps, don't cut it all out, because that would potentially mess up any tests, but to cut it back." With all due respect, what good does cutting back on it do? if he's reacting, won't he react to ANY amount of gluten he's eating? Cutting back doesn't make sense to me? I know he can't cut it out completely. What am i missing? And what do I do for him in the next month while he's doubled over in cramps? And I'm good with the idea that he doesn't have celiac, but if not then what is his problem, and why are the docs ok with making him wait potentially months to figure it out?

btw, he doesn't have any other symptoms other than being very slight in build (4'10" and 63 lbs) and really bad teeth (no enamel on some of them)

i'm so bummed. i had a positive biopsy, but negative bloodwork, my stupid doc told me i don't have celiac, but maybe i have a gluten sensitivity, she made it out to be no big deal, she even said, it's better because you don't have to be so stringent. i know she's just dumb and that i do have celiac, but part of me wanted to believe her. so, i've been gluten free, and feeling 10,000 percent better, my stomach was calm and it was really weird to eat and NOT feel that burning pain an hour later. then night before last we went to Panda Express, i thought, i'm not eating any wheat or anything, so it should be fine, i didn't eat anything breaded, just chicken and mushrooms and white rice, i thought i was safe, but no, the next day everything made me sick, dinner gave me the usual bad cramps, not full on D, but crampy and the burning was back. i just looked at their website and saw that what i ate had wheat in it, they don't offer any gluten-free foods other than white rice. today my gut is settling back down, but now i know i must be vigilant, not just non-chalant about not eating blatant wheat foods. i feel like i really do have celiac and i am so bummed, i thought maybe i was just being paranoid of hypochondriac-ish or something, but no, i really do have to be careful...i'm so bummed...

thanks for the input y'all, here we go....

so, seeing how my GI doc is completely incompetent, AND i have to get my kids tested now, does anybody know of any good docs in the Seattle area???

so, i guess the only other thing to do is get the genetic testing, but also, i could just wait until my kids get their bloodwork done, if any other them are positive then i really don't need to look any further.

but how do you get genetic testing done? is it done through the doc's office? i think it's interesting that my doc didn't suggest it, on the other hand, maybe i shouldn't find it interesting - rather just par for the course with her...

That reads like an Abbott and Costello routine.

We need to start a thread on stupid stuff doctors say! It would be hysterically funny.

it really was!! it was hilarious, but i was really afraid my brain was going to explode trying to grasp what she was saying!! and not saying!!!

BTW, I want to know how to talk both out of my mouth and my rear end at the same time. Because that is what this guy is doing...

it was an amazing sight, lemme tell ya!!!

To get your insurance company to pay for your kids to be tested, they need a reason. If the mom has Celiac, that's a reason. That's why I hoped that your doc would listen to some doctors who know about Celiac.

I hadn't thought of that, I will call on Monday and ask about it, but they do all have abdominal pains, so that might be enough, I'm glad you mentioned it, thanks!!

Yeah, I left the doctor's office thinking, really, am I just stupid because I can't understand a thing she was saying. She just kept contradicting herself everytime she spoke. What I'm not sure of is why she was so resistant to just saying, yes, you have celiac disease. Maybe she didn't want to look wishy washy or indecisive or something, I don't know. But it really was hilarious. She even told me to tell the kids doc that I had a positive biopsy, so the kids need to be tested for celiac. But she NEVER would say, because YOU have celiac the kids need to be tested. She simply wouldn't say it!!!

I'm not sure what the insurance will say, that issue never actually occurred to me, I'll have to check it out, thanks for mentioning that!

My sister was telling me to go get a second opinion but I really think that would be a waste of time and money, since a monkey could diagnose me after the tests and stuff, so I'm just gonna go with it.

Thanks for listening to me vent!!!

Ok, the tests i've had and the results...

full celiac panel - negative

upper endoscopy - positive for villi damage

abdominal CT scan - fatty liver, otherwise normal

breath hydrogen test - positive for bacterial overgrowth

went on a gluten free diet - feeling SOOOO much better, no more diarrhea, no more cramping and burning pain, more clear headed

doc told me that i don't have celiac because i had negative bloodwork, in spite of the positive biopsy, put me on antibiotics (didn't work), probiotics (didn't work), then told me that if the probiotics didn't work I would have to go on long term, cycling antibiotics probably for the rest of my life...

decided to give the gluten free diet a shot after talking to y'all, other docs, and nutritionists

went to a follow up today to discuss the results of going gluten free, this is a synopsis of the conversation:

doc: so how are you feeling?

me: so much better, could i have celiac disease?

doc: no, because you had negative blood work

me: oh, ok, not even with a positive biopsy?

doc: no, because you had negative bloodwork

me: i heard that you can have a false negative and still have celiac if you have a positive biopsy

doc: no, because the blood tests are much more accurate these days, you are probably just gluten intolerant

me: ok, do you think i should be concerned about my kids, they've had many of the same symptoms i had

doc: oh, you have to get them tested

me: oh, really, why?

doc: because you had a positive biopsy

me: oh, so if they have positive bloodwork then they have celiac disease, even without a biopsy?

doc: well yeah, but a biopsy IS the gold standard, but because you had a positive biopsy, you can assume that if they have positive bloodwork that they have celiac disease

me: oh, ok

doc: it's very important that you get them tested, because if they do have celiac and it goes untreated they could have long term health problems like fatty liver and other problems

me: oh, so could my results showing fatty liver be because of longterm (35 yrs) untreated celiac disease?

doc: no, because you had negative bloodwork, but if the gluten free diet is working for you, you should stay with it, but it is difficult and expensive, so just having an intolerance is better because you don't have to be so strict...because if you did have celiac and weren't diligent enough it can cause long term health problems like fatty liver...

hmmm....i think i may actually be losing my mind...

Well, I don't even know you, being a "newbie" myself, and I'm glad your here. Level-headedness is exactly what I need right now. I don't really feel too terribly freaked out about the diet since I've looked around the gluten-free mall and there are tons of stuff on there. One thing I do worry about is that I have been so afraid to eat that I often restrict myself. Now that I won't be sick all the time AND there are lots of yummy things I can make/buy to eat, I'm afraid I will, and gain a bunch of weight. So I have to keep myself from getting too excited and trying everything! It's a good problem to have!!

Glad you're here, I hope you stick around!

Thank you for the advice. I am spending my day cleaning out the pantry and then heading to the store. I will keep your suggestions in mind. I am not big on processed foods anyway... I figured out a long time ago that I had strange reactions to them. I just didn't realize exactly what the right root cause was. Thanks again for the support.

I feel your pain, I went gluten-free about 5 days ago now, and the other night I had a dream I was running down the hallway eating a Butterfinger, trying to not get caught!!!

Look into GAPS! It is designed to restore the gut's balance of flora. It may make a world of difference for you. There is an introduction diet that starts out very basic whith easily digested, nutrient rich foods. Then you add in naturally probiotic foods and other foods one by one. It is totally grain and starchy vegetable free, and starts off with no fruit. You starve off the bad guys and introduce the good guys.

Thanks for all of the great advice!

I have talked to so many people in the last couple of days because I really reached a point of complete intolerance of all of this (ha!! I made a joke!!! get it - intolerance?!?!)

Anyway, I have called other doctor's offices and talked to the nurses there, who talked to the docs, I've talked to y'all, I've talked to a couple of nutritionists and everyone agrees - I have most likely have celiac disease since I had a positive biopsy, and that the bacterial overgrowth issue is probably caused by the celiac completely screwing up my intestines. I'm not really sure just why my doc said I didn't other than that she is not familiar with celiac disease at all. And I don't know what else I could do to verify a diagnosis...

So, I'm gonna go on the gluten free diet, which is quite a bit more liberal than the Specific Carbohydrate Diet I had been on for the last two days. I was really afraid to eat bread today, even gluten free bread, I am so glad I didn't get sick afterward!!! YAY!!! When I think about it, it seems really odd to think that if I just stick to this diet, I won't be sick like that ever again (within reason). I remember being 5 years old and my babysitter giving me pepto bismol because I was sick after I ate, I don't ever remember a time not being afraid to eat...it's kinda exciting!!!

You might find some help with the Open Original Shared Link or the Open Original Shared Link. Both were created to help people with bacterial issues in the gut and are both very successful in a large number of people. My daughter-in-law is one of them. She was very sick for many months until she started the SCD diet.

Basically these diets shun most simple carbs (no rice, potatoes, other grains/seeds of any kind), limited or no dairy, no sugars or other sweeteners except for honey) and rely on nuts, meats, veggies and fruits. By their nature, they are also gluten-free.

Just something to consider, not saying it fits everyone, and not making any medical recommendations since I am not a medical professional.

Thanks for the suggestion. I found the SCD on the SIBO (small intestinal bacterial overgrowth) site. I actually did start the diet yesterday. It's kinda bizarre to think about - I haven't had any grains, dairy, or sugar in the last 48 hours. And surprisingly enough, other than a headache (which I have quite often anyway) I feel ok. My stomach has been it's normal crampy self, but nothing worse than I'm used to. I'm guessing I will continue to feel this way until my intestines heal??? Today I'm really craving chocolate and I'm getting kinda desperate, but I've kinda gotten to a point where I feel like I am just poisoning myself every time I eat any breads or chocolate.

I guess I'm kinda confused about the diagnosis thing though...The doc said I have the intestinal damage indicative of celiac, but not the blood work, so no celiac?? And I've also read that Celiac can cause SIBO??? But not the other way around - SIBO doesn't cause intestinal damage...so I don't know, and she doesn't even seem to entertain anything other than long term antibiotics. And I don't think I can do that.

If you were tested and had villi damage, I would, for the time being consider it a gluten issue as well as a bacteria overgrowth.

Try the diet for at least two months with true dedication and my guess is that you will feel tremendously better. If you DO have a positive dietary results....you have your answer.

Start simple with meats, seafood, rice, potatoes, fresh veggies and fruit. Limit your spices and limit your dairy(temporarily). We can help you with options if this is your choose or direction.

The bottom line is to feel better and this might be a good step toward good health.

And welcome!

Thanks for the advice...

I'm gonna try this. The one thing I am afraid of, which I guess I shouldn't be, is that almost 4 years ago I quit drinking soda to lose weigh (totally robbed on that one, didn't lose a pound), then when I did try to drink it, it made me violently ill, then any sugared drinks began to make me ill for days, now the only thing I can drink is water, everything else makes me so sick. I'm so afraid that when I limit my diet, it'll just get more and more restricted till I can only eat chicken and carrots or something. I guess I'm just whining, but I do like food, and I feel like I'm losing that. It's kinda depressing actually. But on the other hand, I'm so tired of the cramping and pain and diarrhea, I know I should be grateful I have a potential answer, it's just hard. I'm also very low income with four kids, so it's not like I can afford to go buy gluten-free food, I just gotta eat what I have available. I know I'm pouting, I apologize...

Ok, so here it is...I have many of the symptoms of celiac, went to gastro doc, she did blood tests, the full celiac panel and upper endoscopy. the bloodwork came back normal, but the endoscopy showed vili damage, so then we did a breath hydrogen test and that came back indicative of small intestinal bacterial overgrowth. so she put me on antibiotic to kill the bacterial overgrowth, aside from the fact that it gave me a yeast infection, it constipated me so when i was done with the round of antibiotics and three days later was sick again, the diarrhea and constipation was a really bad combination. so then she put me on probiotics, since the antibiotics did not give me the long term (4-6 months) relief she believed it would, i did actually feel better on the probiotics for about ten days and now i'm back to feeling constantly sick. i'm so frustrated, just like everyone else here who is afraid to eat. any ideas??? am i just grasping at straws here???