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How Do You Emotionally Deal With Setbacks?
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I'm wondering how everyone else deals emotionally with setbacks you encounter during your recovery?

 

I've been doing so well for over a month...yay!  I was diagnosed in January, had a rough beginning.  But for a little over a month was doing great.  I would talk about how good I was feeling, how I hadn't even realized how bad it had been until I saw all of the improvements,  I felt like I really got the label reading, cooking, etc. down.  I was exercising again.

 

And then last Wednesday I started feeling bad again.  By Thursday I was doing the run to the bathroom up to 15 times a day...exhausted...foggy...headache. All of the usual stuff.  I analyzed everything that I had eaten and realized that I had added 2 things into my eating that I hadn't had....almond flour and Ghiradelli chocolate chips.  I bought the chips because a recipe called for bittersweet and I didn't see any from Nestle.  Looking into it I see that they are made in a shared facility.  So, I guess I got too confident, didn't check something out and am suffering for it.  :(

 

I am having a really difficult time with this emotionally.  I feel mad and sad and all of that stuff.  The setbacks in this journey of celiac disease are so harsh and devastating.  They take such a toll.

 

How do you deal with it?  Get through it?

 

Thanks!

 

 

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It is okay to feel all those things -- can't imagine any of us didn't go through rough patches during the early days and beyond.

 

You feel crappy, but this will improve. 

 

For now, lots of water and rest when you are able -- treat yourself to something (non-food) that you love.  A nice bath, a good movie...a walk with music I love blaring in my ears are things that help adjust my attitude. 

 

Hang in there...it gets better, but not always as quickly as we'd like :)

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I can relate. I think we all have been there. Avoiding gluten is such a learning curve, but it doable. I think it is worse when you have glutened someone else. My husband was gluten free years before me. I glutened him plenty of times! Even with my experience, I have glutened myself!

Grieving is a given. It is a lot to give up and I am not talking food but the freedom to walk into any restaurant and order anything without grilling the waitress. I have done a lot of grieving this year. First for celiac disease, then for my vertebrae fractures that occurred from doing nothing (celiac disease related) and recently diabetes.

You will start to feel better soon. Have a cup of tea or coffee and baby yourself this week.

I am going for that second cup!

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Set backs happen even when you do everything right. Those first six months can be a real up and down roller coaster ride as you body starts to get well. I had a big set back after being gluten-free for a few months, and it really brought me down, but I waited it out and came out healthier... if not quite fed up.  LOL

 

Hang in there. I'm betting that by the end of the summer, it will be pretty smooth sailing for you. :)

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It is okay to feel all those things -- can't imagine any of us didn't go through rough patches during the early days and beyond.

 

You feel crappy, but this will improve. 

 

For now, lots of water and rest when you are able -- treat yourself to something (non-food) that you love.  A nice bath, a good movie...a walk with music I love blaring in my ears are things that help adjust my attitude. 

 

Hang in there...it gets better, but not always as quickly as we'd like :)

Thanks, Lisa.  I sure hope it gets better.  It was such a good feeling when I saw all the improvement that this just threw me way off.

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Thanks, Lisa.  I sure hope it gets better.  It was such a good feeling when I saw all the improvement that this just threw me way off.

 

It will :)

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Set backs happen even when you do everything right. Those first six months can be a real up and down roller coaster ride as you body starts to get well. I had a big set back after being gluten-free for a few months, and it really brought me down, but I waited it out and came out healthier... if not quite fed up.  LOL

 

Hang in there. I'm betting that by the end of the summer, it will be pretty smooth sailing for you. :)

That's good to hear.  :)  It is certainly a roller coaster ride...an exhausting one!  How long did it take you to get through your big setback?  How long until you felt really good on a regular basis?

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I can relate. I think we all have been there. Avoiding gluten is such a learning curve, but it doable. I think it is worse when you have glutened someone else. My husband was gluten free years before me. I glutened him plenty of times! Even with my experience, I have glutened myself!

Grieving is a given. It is a lot to give up and I am not talking food but the freedom to walk into any restaurant and order anything without grilling the waitress. I have done a lot of grieving this year. First for celiac disease, then for my vertebrae fractures that occurred from doing nothing (celiac disease related) and recently diabetes.

You will start to feel better soon. Have a cup of tea or coffee and baby yourself this week.

I am going for that second cup!

I really want to baby myself and just crawl in bed under a blanket.  I've got 3 kids including a 2 year old, so I get very little chance to do that.  Another cup of tea is definitely coming up right now though. 

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I'm wondering how everyone else deals emotionally with setbacks you encounter during your recovery?

 

I've been doing so well for over a month...yay!  I was diagnosed in January, had a rough beginning.  But for a little over a month was doing great.  I would talk about how good I was feeling, how I hadn't even realized how bad it had been until I saw all of the improvements,  I felt like I really got the label reading, cooking, etc. down.  I was exercising again.

 

And then last Wednesday I started feeling bad again.  By Thursday I was doing the run to the bathroom up to 15 times a day...exhausted...foggy...headache. All of the usual stuff.  I analyzed everything that I had eaten and realized that I had added 2 things into my eating that I hadn't had....almond flour and Ghiradelli chocolate chips.  I bought the chips because a recipe called for bittersweet and I didn't see any from Nestle.  Looking into it I see that they are made in a shared facility.  So, I guess I got too confident, didn't check something out and am suffering for it.  :(

 

I am having a really difficult time with this emotionally.  I feel mad and sad and all of that stuff.  The setbacks in this journey of celiac disease are so harsh and devastating.  They take such a toll.

 

How do you deal with it?  Get through it?

 

Thanks!

I highly doubt that there was any gluten in the chocolate chips.  Ghirardelli does an excellent job during manufacturing and I eat these same ones every time I make cookies and have never gotten sick once in 9 years gluten-free.  I am an extremely sensitive celiac also.  You have not been gluten-free for very long at all......and these chocolate chips are very rich so maybe your system just couldn't handle it right now.  You will find that you may have reactions in the beginning for awhile with foods that are on the rich side and do not contain gluten.  I consider Ghirardelli one of the safest companies out there for gluten free chocolate.  Plus, shared facility is different than shared lines.

 

I hope you feel better but do not sweat this at all.  It is not a setback, just a little blip in the big scheme of things.  You will continue to heal but have to accept that once in a while, something will not agree with you and it will take more than 4 months to feel tons better.  This is what we all go through and it will get better.  Now go and have another cuppa tea!  :)

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I hope you feel better but do not sweat this at all.  It is not a setback, just a little blip in the big scheme of things.  You will continue to heal but have to accept that once in a while, something will not agree with you and it will take more than 4 months to feel tons better.  This is what we all go through and it will get better.  Now go and have another cuppa tea!  :)

 

I like that - it is not really a setback but just a blip... well put. :)

 

 

That's good to hear.  :)  It is certainly a roller coaster ride...an exhausting one!  How long did it take you to get through your big setback?  How long until you felt really good on a regular basis?

 

My blip was a return to fatigue, hair loss and a major bout of joint pain. It hit me at about 2 months gluten free and was done within about 3 months. It was a nasty one, but on the bright side it was my last nasty bout of pain.  I have had a few mild blips since then, in fact my fingers have been bothering me for a few weeks now, but it is no where near as severe as that last blip, or ones I had while still consuming gluten.

 

At 6-9 months gluten-free, I was feeling quite a bit better. Since that time, I my health improvements have slowed a fair bit, but it is still much better than I was three years ago.

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I like that - it is not really a setback but just a blip... well put. :)

 

 

 

My blip was a return to fatigue, hair loss and a major bout of joint pain. It hit me at about 2 months gluten free and was done within about 3 months. It was a nasty one, but on the bright side it was my last nasty bout of pain.  I have had a few mild blips since then, in fact my fingers have been bothering me for a few weeks now, but it is no where near as severe as that last blip, or ones I had while still consuming gluten.

 

At 6-9 months gluten-free, I was feeling quite a bit better. Since that time, I my health improvements have slowed a fair bit, but it is still much better than I was three years

 

Thank you for sharing that...it's nice to hear that kind of stuff because it gives me hope.

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I highly doubt that there was any gluten in the chocolate chips.  Ghirardelli does an excellent job during manufacturing and I eat these same ones every time I make cookies and have never gotten sick once in 9 years gluten-free.  I am an extremely sensitive celiac also.  You have not been gluten-free for very long at all......and these chocolate chips are very rich so maybe your system just couldn't handle it right now.  You will find that you may have reactions in the beginning for awhile with foods that are on the rich side and do not contain gluten.  I consider Ghirardelli one of the safest companies out there for gluten free chocolate.  Plus, shared facility is different than shared lines.

 

I hope you feel better but do not sweat this at all.  It is not a setback, just a little blip in the big scheme of things.  You will continue to heal but have to accept that once in a while, something will not agree with you and it will take more than 4 months to feel tons better.  This is what we all go through and it will get better.  Now go and have another cuppa tea!  :)

First off, love that you called it a blip.  :)   I will now be using that to talk about it too.

 

Interesting about Ghiradelli...I just couldn't figure out what else it could have been...so I guess I assumed.  I just want to know so I don't do it again, ya know.  I don't really want another blip.  I've felt bad for 6 days now.  Ugh!

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First off, love that you called it a blip.  :)   I will now be using that to talk about it too.

 

Interesting about Ghiradelli...I just couldn't figure out what else it could have been...so I guess I assumed.  I just want to know so I don't do it again, ya know.  I don't really want another blip.  I've felt bad for 6 days now.  Ugh!

Are you sensitive to dairy also?  I am not sure if the bittersweet contains dairy but that's another possibility.  I would wait before trying any rich chocolate....at least until you feel better.  I know how frustrating that can be but the good news is that, after time, you should be able to tolerate these types of foods again.  I have been gluten-free for 9 years now so can tolerate so much more than in the beginning.  It did not take 9 years to do that, either, so don't panic.  ;)  You will also bounce back faster, if you do take a hit or eat something that makes you feel off.  A Celiac's tummy is just more sensitive and sometimes, for unknown reasons, things bother us.  I hate that too! 

 

Feel better soon!

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you might want to try a food journal for a little while :)  i found it very helpful, even to identify sources of irritation other than gluten.  plus, when i did get hit (alot!  in the beginning) it helped me track my symptoms/to know what to expect.   (for the next time ha ha)    lots of water, naps........  feel better :)

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I still recall when I was not doing so well during the first year (off and on) and Gemini would tell me "it's just a blip"

and then we would talk about other things and laugh. Since then, we have become the very best of friends, so I will say this:

Listen to this wise woman!

 

Blips pass. I promise, it gets better.  Take it from a former serial  "blip girl".... :D

 

Be good to yourself. As Ski says, lots of water, rest when you can and know that you are already recovering.

Onward and upward.

 

P.S. If it makes you feel any better, when I get hit (and we all do--even the veterans!) it passes more quickly than it did at the beginning. (still hate the joint pain and the hair loss--but that's just my "special thing" from our nemesis gluten)

 

Hang tough, kiddo.

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Hi icelandgirl,

I'm still pretty new to this too, and I had a bad "blip" at 3 1/2 months that lasted about 2 months. It was sooo frustrating and I was pretty upset about it. Then one Sunday morning I woke up and miraculously felt better and now at 7 months, I am still feeling pretty darn good. The vets here told me similar things they are telling you, and it helped so much to know this is normal for some people and that relief is in sight.

I do know that some of the foods I was eating were causing me problems at that time, so that is definitely something to watch for, but the good news is I can eat most of those foods now in moderation.

I hope you feel better soon :)

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Hi icelandgirl,

I'm still pretty new to this too, and I had a bad "blip" at 3 1/2 months that lasted about 2 months. It was sooo frustrating and I was pretty upset about it. Then one Sunday morning I woke up and miraculously felt better and now at 7 months, I am still feeling pretty darn good. The vets here told me similar things they are telling you, and it helped so much to know this is normal for some people and that relief is in sight.

I do know that some of the foods I was eating were causing me problems at that time, so that is definitely something to watch for, but the good news is I can eat most of those foods now in moderation.

I hope you feel better soon :)

Hi icelandgirl,

I'm still pretty new to this too, and I had a bad "blip" at 3 1/2 months that lasted about 2 months. It was sooo frustrating and I was pretty upset about it. Then one Sunday morning I woke up and miraculously felt better and now at 7 months, I am still feeling pretty darn good. The vets here told me similar things they are telling you, and it helped so much to know this is normal for some people and that relief is in sight.

I do know that some of the foods I was eating were causing me problems at that time, so that is definitely something to watch for, but the good news is I can eat most of those foods now in moderation.

I hope you feel better soon :)

Hi havanesemom...Thank you for the encouraging words. I do feel discouraged at this point...but everyone on here really lifted me up today.

Do you know what caused your bad blip? 2 months is a long time...which foods were causing you issues if you don't mind sharing? I'm pretty much living on bananas, tea and potatoes at this point. I'm like stupid auto immune disease...but that really doesn't help with anything.

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Are you sensitive to dairy also?  I am not sure if the bittersweet contains dairy but that's another possibility.  I would wait before trying any rich chocolate....at least until you feel better.  I know how frustrating that can be but the good news is that, after time, you should be able to tolerate these types of foods again.  I have been gluten-free for 9 years now so can tolerate so much more than in the beginning.  It did not take 9 years to do that, either, so don't panic.  ;)  You will also bounce back faster, if you do take a hit or eat something that makes you feel off.  A Celiac's tummy is just more sensitive and sometimes, for unknown reasons, things bother us.  I hate that too! 

 

Feel better soon!

Hi Gemini...Thank you for sharing your wisdom. I haven't felt any sensitivity to dairy...which I'm glad about. Which other foods did you have trouble with.

You've been gluten free for 9 years! Wow...how long after starting until you felt good on a regular basis? Do you still have blips? Is that just an inevitable part of the disease?

Thank you again!

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you might want to try a food journal for a little while :)  i found it very helpful, even to identify sources of irritation other than gluten.  plus, when i did get hit (alot!  in the beginning) it helped me track my symptoms/to know what to expect.   (for the next time ha ha)    lots of water, naps........  feel better :)

I like the food journal idea quite a bit...thanks for that suggestion!

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I still recall when I was not doing so well during the first year (off and on) and Gemini would tell me "it's just a blip"

and then we would talk about other things and laugh. Since then, we have become the very best of friends, so I will say this:

Listen to this wise woman!

 

Blips pass. I promise, it gets better.  Take it from a former serial  "blip girl".... :D

 

Be good to yourself. As Ski says, lots of water, rest when you can and know that you are already recovering.

Onward and upward.

 

P.S. If it makes you feel any better, when I get hit (and we all do--even the veterans!) it passes more quickly than it did at the beginning. (still hate the joint pain and the hair loss--but that's just my "special thing" from our nemesis gluten)

 

Hang tough, kiddo.

This is what I love about this board...There is so much caring and compassion here...and wonderful people ready to share their wisdom...Thank you. A celiac bff sounds like what I nees. :)

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Hi Again,

Sorry the quote function doesn't work for me on this computer.

To answer your question about if I know what caused the blip, I don't know for sure what caused that 2 month blip. Some of the foods that were bothering me were certified gluten free corn based cereals, corn pasta, tea, broccoli, tomato, anything spicy, chocolate, dairy and I know there are more I am forgetting (I still have brain fog and memory issues, but I'm ok with that). My GI doctor recommend the low FODMAP diet and I think that help reset my system too. I only did it strictly for a couple of weeks, so that wasn't too bad at all. I was also pretty stressed out about my diagnosis at that time, so that didn't help my gut either. I wish I had a specific answer for you, but it could have been anything that caused it and maybe was just part of my healing process. I actually thought about not writing that my blip it lasted 2 months because I didn't want to discourage you. For the record I am a generally a very slow healer, so hopefully your blip will be over really quickly :).

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This is what I love about this board...There is so much caring and compassion here...and wonderful people ready to share their wisdom...Thank you. A celiac bff sounds like what I nees. :)

 

 

I have been fortunate to acquire many celiac BFFs...and you will to!  :) Just hang in there. Recovery is the mother of all exercises in patience.

....but healing happens. 

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This board and members like Gem and Irish was a major part of me figuring out a rather complex puzzle.

 

I had a little Blip yesterday afternoon -- I have them often, not from gluten but other sources -- last night sucked -- today I'm sore, but much better.

 

Nice long epsom salt/baking soda soak to start the day - which will proceed slowly with lots of water ;)

 

Hang in there :)

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Thank you all for your kind words and encouragement. Hearing your stories helps me so much. Emotionally I feel so much better.

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Hi Gemini...Thank you for sharing your wisdom. I haven't felt any sensitivity to dairy...which I'm glad about. Which other foods did you have trouble with.

You've been gluten free for 9 years! Wow...how long after starting until you felt good on a regular basis? Do you still have blips? Is that just an inevitable part of the disease?

Thank you again!

I did very well on the gluten-free diet and then at the 2 year mark, that's when the dairy problem became evident.  I did not figure this out sooner because my gut was totally trashed at diagnosis so I probably didn't notice the fact that dairy was becoming a problem until I had healed a bit.  That's a fairly common thing to happen to us.  So...after 9 years, I am dairy lite.  I can tolerate small amounts but it is also cumulative with me.  No drinking milk (which I do not like anyway), no ice cream or puddings....things like that.  Don't even miss ice cream because who wants to live in the bathroom every time you eat some?  The cramping from it is pretty bad.  I still heven't gotten diary totally back so at this point, I have given up and am fine with that.  I would rather feel good.

 

I steadily felt better, with no major set backs in the beginning, because I ate a mainly whole foods diet with some bread and a few goodies thrown in because I was 20 pounds underweight when diagnosed.  I really needed to plump up.  But it was 3 years in total before the very last symptom disappeared.  My gut felt good but I had this leg pain in my right femur bone that was so bad, I was limping.  Had x-rays and there was no arthritis at all.  No one could explain it.  So, I did what I always do and just soldiered on until one day I woke up and reliazed my leg was not hurting anymore.  I think it might have been some neuro thing or vitamin deficiency that finally resolved because it has never returned.

 

I have to say that I rarely have blips at all anymore.  I am very careful, take no unnecessary chances when dining out and do that infrequently anyway.  It is a treat when we go out.  I hate getting glutened because I am one of those who erupt like a volcano.  :unsure:   The whole GI tract explodes and I get sick as a dog for about 1-2 days.  I am back to normal by day 4 but it wipes me out so I try to avoid it like the plague.  I really hate being sick.  But steadily, over time, I have gained 20 pounds and work out in the gym to develop those muscles that never had the chance to develop.  I actually have osteoporosis in my spine and osteopenia in my hip from Celiac, so that is the reason I weight train.

 

It is hard to believe it in the beginning of your Celiac life that you really can gain your health back and be comfortable and feel well but it does require time.  Of course, I do have other autoimmune problems from going so long without a diagnosis but I manage them well and do not take much medication. I am a firm believer in eating healthy, not cheating, exercise and don't forget to laugh often.  I do not let the medical world control or have too much input in what I do because I don't always believe they do the right things.  They tend to scare people. Yeah, so what, I have 4 AI diseases. I will never let that stop me or slow me down and just think positive. Even my doctor admits I am doing well and do a good job of managing things and really, with some education, anyone can achieve the same. Learn all you can, over time,so mistakes can be minimized.  It is not inevitable that you will feel badly more often than you feel good with Celiac.  Maybe in the beginning while you heal but not down the road.  Plus, after being gluten-free for so long, I am totally comfortable with this life and do not pine about foods I cannot eat. It is second nature to me and I would never go back.  You will feel this way too, I promise.  Go forward, not backward. If you are missing something food-wise, let us know because usually there is a good gluten-free version that someone will know about.  And, lastly, drink more tea.....I find that tea is so settling to the stomach.  The British have that right!  :)

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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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