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At The End Of My Rope.
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I have a 2.5 year old daughter who has been "high needs" since birth. Early on we discovered she was allergic to dairy and eliminated that from her and my diet (breastfeed, still breastfeeding) Except for a few phases in her life, she usually seems unhappy more often than not. This currently manifests itself in whining, tantrums, extreme clinginess among other things. She also has always been underweight, has severe tooth decay, intermittent mysterious rashes, and sleeps TERRIBLY (at most 2 hours at a time at night, all night) she also constantly wants to nurse. Lately all of this has gotten even worse, and I am starting to get burned out from being her mother. I often feel like I have nothing more to give her, and nothing makes her feel better, or happier. I finally brought her to a recommended naturopathic doctor and he suggested going gluten free for 4 weeks. Does this seem like a reasonable effort to you folks who have gluten intolerant children?

Since our visit to the doctor we have been Gluten-free for 1 week. It seemed like two of those days were slightly better: improved mood and sleeping. However, today I felt so discouraged as it seemed any progress I had been seeing went out the window: An entire day of whining and haven't been able to put her down without a total meltdown. So frustrated. Any help? This is my last ditch effort.

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poor baby :(  and poor mama!!  (((((((hugs))))))) man, it's rough when our babies are sick (and you're 'it' - they just want mommy....)

 

at 2-3, they're at a clingy age anyway - if you noticed a difference feeding her gluten-free, DO continue to.  when you start this diet alot of times, it's two steps forward, one step back - she may just be having a bad day (she's a people, we all have those) or maybe she got some gluten somewhere and is reacting from it?  

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So sorry you are going through this. Has she been tested for celiac? If she hasn't been tested yet and you plan to, she'll need to be eating gluten until all testing is complete. It may be really hard to put her back on gluten for testing if she ends up responding well to the gluten-free diet, so if you think an official diagnosis might matter for school (in the future), etc., you might want to consider it now.

My daughter was just diagnosed with celiac at age 4, and her behavior was just like you describe - constantly fussy since birth, extremely clingy and whiny despite very consistent parenting and a wonderfully supportive daycare, etc. We could just never make her happy, no matter what we did. She had digestive issues since birth too, but the behavioral and neurological/sensory problems were really our main challenge early on. She started having daily tantrums before age 1, and by the time she was 3 she was routinely having 10-12 horrible tantrums almost every day. Her sleep was also so bad that she was sent to a neurologist at one point because they were concerned that all the thrashing around and crying every 45 minutes in her sleep might be seizures. We were completely exhausted, and everyone keep looking at us like we, as parents, were somehow causing this. Her tantrums were never for ordinary things like wanting toys or treats - they were triggered by the tiniest itch, sudden noises (even if they weren't loud), bright lights, and things like that. She was diagnosed with sensory integration disorder at 3 1/2, and it was kind of helpful to have a name for it, but it took until recently to get to the root of the problem. She was just diagnosed with celiac a few weeks ago, and she's suddenly turned into a sweet, loving, usually-calm child! The transformation really was amazing. And the sensory problems are almost gone already.

Whether or not you decide to pursue celiac testing, I'd urge you to give a strict gluten-free diet a good long try for at least several months (once testing is complete, if you go that route). Having gluten withdrawal symptoms for a few weeks seems to be normal, so a lack of immediate changes doesn't necessarily mean it's not helping. My daughter's first five days were pretty rough, but after that we saw a clear and fairly steady improvement. We did discover that she is sensitive to the barley enzymes used in the supposedly gluten-free Rice Dream that she was drinking every day, so we had to cut that out too. She also reacts to many brands of processed gluten-free foods, so we've had to stick to almost all fresh or homemade foods for now. Being constantly vigilant about cross-contamination in everything is tiring, to be honest, but it's so worth it to have a happy child!

I hope things improve for you soon, whether gluten is causing your daughter's problems or it's something else. As parents, we really do know our children best, and it's especially hard if doctors and others keep brushing aside extreme fussiness and clinginess as a behavioral problem when there really is an underlying reason that the child's in pain all the time.

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if they are planning on testing her for celiac, she will need to be eating gluten, greeniebeanie is right.  i thought your doc wanted to see if she responded positively on a gluten-free diet.  if she did respond well, it sure might help her mood.  (i think my 4 y.o. grandson is at least intolerant but his parents don't see the connection - ugh - frustrating.  some days, he just cries over everything)  sorry if i misunderstood :)  

 

greeniebeanie - i'm glad you're having a happier child, you sure have been through it - and you are a good detective!  

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I would consider testing too. the tests are:

DGP IgA and DGP IgG (best test for kids)

tTG IgA and tTG IgG

total serum IgA

AGA IgA and AGA IgG (test for gliadin sensitivity)

EMA IgA (detects advanced villi damage - rarely positive in kids

 

The first three test would probably be the best for celiac disease testing in kids. She must be eating gluten for accurate testing.

 This report discuses the disease and the tests (on pages 11-12): http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

If all tests are negative, she may have non-celiac gluten sensitivity (NCGS) which has all the same nasty symptoms as celiac disease minus the villi damage. It's present in 6-30% of the population, most stats report closer to 10%, which is much more common than celiac (<1%).

 

If you decide to keep her gluten-free, keep in mind that she might have hit withdrawal. I can't remember that stat, but I think it's about one third of people experience withdrawal from gluten. It hits a few days after being gluten-free and can last a few weeks. It often involves fatigue, major moodiness, headaches, and some return of GI issues. It usually last somewhere between 1-3 weeks.

 

Best wishes.

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Oh, I forgot to add that some kids seem to have issues with breast milk if the parent is eating gluten. You might want to get tested too (it's genetic) and then go gluten-free as well.

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((Big Hugs!!)

My super silly siren girl was exhausting!! She still can be, in a different sense, but those young years were very hard for all of us, especially her. I would get her in for the blood tests ASAP. Do some reading and decide if you are interested in pursuing a biopsy or not. The best chance of "positive" blood work is eating gluten, so give consideration to how you think testing fits into your family's health management philosophy. We chose not to pursue the biopsy, but our daughter was less than a year and could not eat any gluten directly. Working with your healthcare providers will be necessary to ensure accommodation for her as she gets older if she does have celiac, gluten intolerance, and/or food allergies....or any other medical condition for that matter.

Have you gone gluten free? This is absolutely necessary for a proper gluten free trial if you are still breastfeeding. I went through withdrawal, as did my daughter, when we went gluten free. It was a very, very, very difficult time. In some ways we were lucky, as any gluten slip was obviously worse. And it was so much obviously worse that I had constant support and encouragement from my husband.

We had to take our house gluten free to see continued improvement. We eventually recognized that "gluten free" processed foods were keeping us unwell. Moving to a whole foods diet that was prepared in our strictly gluten free home is what we had to do to get better. We have also had to work hard to find healthcare providers to help improve our health and help us navigate complications from not being properly accommodated.

I found it very helpful to have a babysitter help me during these times. Are you the primary carer for your daughter 24/7? if so, you should consider ways to help support yourself better. We had a neighbor teenage girl that would come over and help, and it was a blessing. You need breaks from the constant demands that a sick child has. Our daughter had constant, chronic bellyache that was severe. She was also depressed (so sad, so sad, I don't know why but I am just so sad!!! Wail, wail, wah, wah....on and on and on when she could *finally* articulate it at age 3!). Oddly enough, she started talking very, very early, but communicating the complexity of her pain takes time to develop. We got a body chart to help us improve the communications and better understand where she was feeing pain.

The symptoms that you described are like reading our own story. We did not have the underweight, but we went gluten free much earlier. But we did have high fever and vomitting with accidental exposures. I was not very diligent initially because of the funny logic in my head, but that only prolonged the suffering and probably contributed to more damage. Getting super sensitive diligent and giving it time under those super sensitive protocols is when we finally made substantial progress in getting well.

Please keep in mind that your daughter may be suffering from chronic pain. Trying to keep that in perspective usually helps me maintain the needed compassion. But don't underestimate how exhausting her care taking is, and you must be well supported. Best wishes for getting this sorted as quickly as you can. I know of other celiac mothers that can relate to your struggles, so please take comfort in knowing that you are not alone.

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I had to make a list of things that help me cope and try to do some of them every day. It also helps to have a list of things that help my daughter cope. The best ones are when the same thing is on both lists! Here are some of our coping tools:

-making herbal teas, we like peppermint, chamomile and licorice root

-going outside for walks and swings

-taking baths with Epsom salts

-foot and belly massage (we use Shea butter or other pure oil)

-my daughter uses heat packs on her belly

-head and neck rubs

-diffusing essential oils

If you can get her in the kitchen to help with food prep, she may enjoy it....and perhaps it can be a distraction. My super silly girl has always been quite proficient at getting herself snacks from the kitchen. We facilitate that by making sure the refrigerator has stuff she can reach easily, including fruits, veggies and leftovers in easy to open containers on lower shelf. You can precut fruits and veggies to make it easier for her to grab as well.

I used a lot of "baby" carriers as well. There are some fantastic ones out there, and I carried my children for many years. You may find it helpful to get one if you don't already have one (one that accommodates a toddler/young child). I liked my wraps, Ergo and Mei Tei carriers. I found www.thebabywearer.com to be helpful in discovering more about wearing my children. Wearing my children was invaluable for our family. Getting my child on my back and out for a walk was very helpful in those times when putting her down was not an option.

I hope you find relief soon.

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wow! thank you so much for the support and advice. It is such a relief to know that other people have been there. I have some progress to update on, and more questions, but will put them in a new  message. thanks again!

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Welcome Mom and Baby Girl!!!

 

Here is the good news....may of us have reached the end of our ropes -- some several times -- but we are willing to pass our ropes to others to give you a bit more line.

 

Hang in there -- it does get better :)

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I have a 2.5 year old daughter who has been "high needs" since birth. Early on we discovered she was allergic to dairy and eliminated that from her and my diet (breastfeed, still breastfeeding) Except for a few phases in her life, she usually seems unhappy more often than not. This currently manifests itself in whining, tantrums, extreme clinginess among other things. She also has always been underweight, has severe tooth decay, intermittent mysterious rashes, and sleeps TERRIBLY (at most 2 hours at a time at night, all night) she also constantly wants to nurse. Lately all of this has gotten even worse, and I am starting to get burned out from being her mother. I often feel like I have nothing more to give her, and nothing makes her feel better, or happier. I finally brought her to a recommended naturopathic doctor and he suggested going gluten free for 4 weeks. Does this seem like a reasonable effort to you folks who have gluten intolerant children?

Since our visit to the doctor we have been Gluten-free for 1 week. It seemed like two of those days were slightly better: improved mood and sleeping. However, today I felt so discouraged as it seemed any progress I had been seeing went out the window: An entire day of whining and haven't been able to put her down without a total meltdown. So frustrated. Any help? This is my last ditch effort.

 

 

I have been there and know what you mean. Some days (and occasionally nearly ten years later we still have times like that) I just felt that I had nothing left to give! My celiac daughter was so sick the whole time I was nursing her and I had to go through an elimination diet. I ended up eating no dairy or beef and she got some better, but we were clueless about the wheat connection then. HANG IN THERE! Get on this board when you need some encouragement! My daughter was so sick and fussy that I babied her too much, and by the time she was three we had created a monster. It was hard for us to transition to being "tougher" on her, but it saved our sanity. I figured out around age 2 or 2.5 that she could have a meltdown in her room where I couldn't hear it just as well as she could with me holding her! ha. Sometimes just give yourself a little break from it all. It really won't hurt her to cry it out a bit in her room while you take a shower or whatever you need to do for your own sanity.

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Wow. This is SO us! I'm sorry you're going through this too, but it's nice to know that someone out there understands! Unfortunately, my daughter just tested negative for celiac. So I have no idea what the cause is of her pain, constipation, etc. :'(

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Wow. This is SO us! I'm sorry you're going through this too, but it's nice to know that someone out there understands! Unfortunately, my daughter just tested negative for celiac. So I have no idea what the cause is of her pain, constipation, etc. :'(

 

Welcome!

 

Did your daughter have a complete Celiac Antibody Panel?  I ask, because many docs will order only one or two of the tests to "screen" for Celiac Disease.

 

If she has been tested....you may wish to consider removing ALL gluten sources for three months to monitor improved symptoms.  Unfortunately Non-Celiac Gluten Sensitivity presents with many of the same symptoms as Celiac Disease without measurable antibodies.  The only test for NCGS is elimination of gluten.

 

Hang in there and keep looking for answers :)

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Welcome!

 

Did your daughter have a complete Celiac Antibody Panel?  I ask, because many docs will order only one or two of the tests to "screen" for Celiac Disease.

 

If she has been tested....you may wish to consider removing ALL gluten sources for three months to monitor improved symptoms.  Unfortunately Non-Celiac Gluten Sensitivity presents with many of the same symptoms as Celiac Disease without measurable antibodies.  The only test for NCGS is elimination of gluten.

 

Hang in there and keep looking for answers :)

Thanks!

I'm not sure what was included in the panel. She sees the ped for a follow up on Monday and I'm going to ask for a copy of the results. What test *should* she have gotten? She'll be 2 on Friday; I'm wondering about the possibility of a false negative. The ped is suppose to put in a referral for GI. I'm keeping her on gluten for now, until we see the GI, in case they want to do other testing/scope.

Sorry to hijack your thread, OP!

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Thanks!

I'm not sure what was included in the panel. She sees the ped for a follow up on Monday and I'm going to ask for a copy of the results. What test *should* she have gotten? She'll be 2 on Friday; I'm wondering about the possibility of a false negative. The ped is suppose to put in a referral for GI. I'm keeping her on gluten for now, until we see the GI, in case they want to do other testing/scope.

Sorry to hijack your thread, OP!

 

We all hijack around here...helps everyone learn...

 

so...from this point forward....ALWAYS ask for written/electronic results for any tests run for anyone in your family (ya...took my way too long to figure this one out).

 

Full Panel:

 

Total Serum IgA

tTG - both IgA and IgG

DGP - both IgA and IgG

EMA - IgA

 

Nutrients.....Celiac prevents proper absorption of nutrients:

 

B1,B2,B6, B12, D,K, Iron,Ferritin, Copper and Zinc

 

If they have not been run:

 

CMP

CBC

 

Hang in there...ask more questions...read..research.

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I have a 2.5 year old daughter who has been "high needs" since birth. Early on we discovered she was allergic to dairy and eliminated that from her and my diet (breastfeed, still breastfeeding) Except for a few phases in her life, she usually seems unhappy more often than not. This currently manifests itself in whining, tantrums, extreme clinginess among other things. She also has always been underweight, has severe tooth decay, intermittent mysterious rashes, and sleeps TERRIBLY (at most 2 hours at a time at night, all night) she also constantly wants to nurse. Lately all of this has gotten even worse, and I am starting to get burned out from being her mother. I often feel like I have nothing more to give her, and nothing makes her feel better, or happier. I finally brought her to a recommended naturopathic doctor and he suggested going gluten free for 4 weeks. Does this seem like a reasonable effort to you folks who have gluten intolerant children?

Since our visit to the doctor we have been Gluten-free for 1 week. It seemed like two of those days were slightly better: improved mood and sleeping. However, today I felt so discouraged as it seemed any progress I had been seeing went out the window: An entire day of whining and haven't been able to put her down without a total meltdown. So frustrated. Any help? This is my last ditch effort.

OMG I hear you dear, I was there too for 4 years!!! until we eliminated gluten, dairy, sugar and all processed food. I'm still breastfeeding because I know how much it helps to heal the gut and now she is happy!!! sometimes I look at her and cannot believe is the same child, all of this tells me she was upset because she didn't feel well, she had a big belly that disappeared with the new diet, but whenever she get cross contamination a lot of those symptoms come back, but since I'm homeschooling her, she is not exposed very much. I send you a big hug!!!

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I have a 2.5 year old daughter who has been "high needs" since birth. Early on we discovered she was allergic to dairy and eliminated that from her and my diet (breastfeed, still breastfeeding) Except for a few phases in her life, she usually seems unhappy more often than not. This currently manifests itself in whining, tantrums, extreme clinginess among other things. She also has always been underweight, has severe tooth decay, intermittent mysterious rashes, and sleeps TERRIBLY (at most 2 hours at a time at night, all night) she also constantly wants to nurse. Lately all of this has gotten even worse, and I am starting to get burned out from being her mother. I often feel like I have nothing more to give her, and nothing makes her feel better, or happier. I finally brought her to a recommended naturopathic doctor and he suggested going gluten free for 4 weeks. Does this seem like a reasonable effort to you folks who have gluten intolerant children?

Since our visit to the doctor we have been Gluten-free for 1 week. It seemed like two of those days were slightly better: improved mood and sleeping. However, today I felt so discouraged as it seemed any progress I had been seeing went out the window: An entire day of whining and haven't been able to put her down without a total meltdown. So frustrated. Any help? This is my last ditch effort.

I forgot to mention that it took us about 1 month to start seeing real changes. Now we are about 6 months in this diet and she is ssssoooo happy, well, sometimes she get upset, but just for a few minutes. When a person has Celiac or gluten sensitivity the exposure to gluten has damage the gut and it takes a while before it starts healing. I'm glad you found a doctor who thought about it, in our case I had to figure it out, then go to a doctor and suggest the test, reason why it took me 4 years!! Hang on please you beautiful mom and keep going, you have a big supporting group here,

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Oh, I forgot to add that some kids seem to have issues with breast milk if the parent is eating gluten. You might want to get tested too (it's genetic) and then go gluten-free as well.

Yes!!! big time...I went gluten free for my girl (because I breastfed her) and discovered I had the same issue, so my physical and mental health also improved dramatically after this...

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Thanks again everyone so great to hear your personal stories and challenges. Progress has continued to be 2 steps forward, 1 step back, over and over again..  We have bad days here and there and I can't tell if it is because she is still working things out of her system or if I accidently exposed her to gluten somehow. She has unfortunately un-potty trained over the course of the last week. It seems as though her brain is "reprogramming" in some sense of that word :) Overall, she is much happier though. I have also gone gluten free and feel much more alert. I feel a bit overwhelmed about all the possibilities for cross contamination, and the confusion of eating out. Still getting the hang of it.

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We all hijack around here...helps everyone learn...

 

so...from this point forward....ALWAYS ask for written/electronic results for any tests run for anyone in your family (ya...took my way too long to figure this one out).

 

Full Panel:

 

Total Serum IgA

tTG - both IgA and IgG

DGP - both IgA and IgG

EMA - IgA

 

Nutrients.....Celiac prevents proper absorption of nutrients:

 

B1,B2,B6, B12, D,K, Iron,Ferritin, Copper and Zinc

 

If they have not been run:

 

CMP

CBC

 

Hang in there...ask more questions...read..research.

I have the results in hand now. Ped GI appt next Tuesday. The ped acted like gluten intolerance didnt exist and said "gluten is a ht topic right now". :/

TTG IgG 1 ref range (11-26)

TTG IgA <1

Endomysial IgA negative

Gliadin IgA 1 ref range (0-20)

IgA 29

Gliadin IgG 2 ref range (0-20)

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I have the results in hand now. Ped GI appt next Tuesday. The ped acted like gluten intolerance didnt exist and said "gluten is a ht topic right now". :/

TTG IgG 1 ref range (11-26)

TTG IgA <1

Endomysial IgA negative

Gliadin IgA 1 ref range (0-20)

IgA 29

Gliadin IgG 2 ref range (0-20)

 

Sorry your ped is being dismissive....sadly this is still far too common.

 

Question -- what is the range for the Total Serum IgA of 29?  If IgA deficient, the tests are inaccurate.  Getting a Total Serum IgG run is not common, but I would suggest it as if the IgA tests are not accurate....that leaves only the IgG based tests...I strongly advise getting two more tests:

 

Total Serum IgG

DGP IgG (Deamiadated Gliadin Peptide) IgG

 

-- which can be tough if your primary is not cooperative.

 

Is your appt today or next Tuesday?  

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There's no ref range on the results paper for the IgA.

Oops, I wasn't clear, the GI appt is next Tuesday, the 30th. I'm hoping for answers, and more testing. She's not even on the growth chart for weight. She lost a pound since her appt a month ago. The ped said he wondered of it was the poop that came out. If it was, that's good it came out, bad that she's still not growing.

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I could have written this post myself!  My daughter has the exact same behaviors.  She was diagnosed a month ago at age 3 with Celiacs.  We are a month gluten free and I have seen changes in her behaviors.  Her tantrums are much less and less intense and she seems to be happier, etc. 

 

I  had NO idea she had Celiacs.  My dr. ran the panel because I had so many complaints about her behavior and lack of potty training.  I seriously was convinced she had a mental disorder due to her mood swings and rages! 

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KGCeliacmom, that sounds like us too! I "joke" that my 2 y/o is bipolar because of how moody she is. I realize that some of it is normal 2 year old behavior and frustrations, but this goes beyond that!

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KGCeliacmom, that sounds like us too! I "joke" that my 2 y/o is bipolar because of how moody she is. I realize that some of it is normal 2 year old behavior and frustrations, but this goes beyond that!

 

Yes she was out of control.  I am talking severe tantrums daily, she was always upset about something, etc.  A month in I have seen positive improvements, ,but I also have to remember that she is still 3 and full of drama.  I honestly did not know how to parent her at all.  I would have never guessed it was gluten all of this time making her so miserable!

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    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
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