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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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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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    • Hello all! I am new on here, and I was wondering if it worth a look for me to get tested for celiac disease. I've been experiencing severe stomach aches accompanied by issues with loose stool, constant fatigue, lots of infections, worsening of skin on my face, frequent nausea, lots of trouble losing weight. I'm asking because I was feeling better at home from vacation after having a very rough semester at school and I'm not very good at keeping track of what I eat typically, but at home it is mostly vegetables and meat, with the occasional rice thrown in. This morning I had my first bagel in months and was extremely nauseous with severe pains and urges to run to the bathroom.  Do y'all think it is worth a try to get tested for celiac disease or some type of gluten intolerance? I'm so tired of being sick and not knowing why... Thank you <3 
    • LexieA, I agree with Plumbago. The symptom's of low stomach acid and high stomach acid are similar so it is easy to confuse the symptom's of one as the other. Dr. Myatt explains this well in her online article about stomach acid. http://healthbeatnews.com/whats-burning-you/ quoting "But My Symptoms Feel Like Too Much Acid…" Strong stomach acid and pepsin quickly "emulsify" fats and proteins, making them ready for the next step of digestion, passage into the small intestine. When these digestive factors are weak, food remains in the stomach for longer and it begins to ferment. Gas pressure from the fermentation can cause bloating and discomfort and can can also cause the esophageal sphincter to open, allowing stomach contents to "backwash" into the esophagus. Even though weak stomach acid is the central cause of this, even this weak stomach acid, which has no place in the esophagus, will "burn." This burning sensation confuses many people, including doctors, who then "ASSuME" that excess acid is to blame. Too little acid, resulting in slowed digestion, and gas which creates back-pressure into the esophagus is the real cause of almost all "heartburn" and GERD." so  you can see how they can easily be confused for each other. you no doubt are having stomach acid issues but it is because it is too little or too much? Timeline helps us determine which it is. If it happens when we eat something it is already to low to  digest the food we are eating. if eating something cause the heartburn/gerd to improve (especially meat) then your stomach acid is really too high especially if this happens between meals. because eating something will naturally dilute/lower the stomach acid pH. I wrote about my stomach acid being misdiagnosed on my celiac.com posterboy blog. ( have summarized most of what you need to know in this reply but the post is still there if you want to study it more for yourself. if your not taking an antacid now then taking BetaineHCL should improve digestion. If it does then raising your stomach acid by lowering you pH should improve your digestion. study on the best way to take powdered stomach acid before trying this. but I found taking 3 to 4 capsules in the beginning was easier than taking only 1 or 2 in the beginning .. .  until I could back it down to only needing one per meal or now none per meal to aid digestion. which is what we are shooting for.  The place where our body is now producing our stomach acid naturally at a healthy level. if you feel a "warm sensation" in your stomach you have reached a good level. I hope this is helpful. I only know it helped me. *** this is not medical advice but I hope you have as a good experience with it as I did. Usually peopledon't  have a trouble taking BetaineHCL unless they have an ulcer or already taking PPI's which are actually lowering  their stomach acid contributing to a viscous cycle of being locked into taking PPI's long term. if PPIs are taken for more than 6 months they can be almost impossible to stop/quit because of the acid rebound people experience when trying to stop taking them cold turkey and why they recommend stepping back doses by 1/2 gradually so they don't get overwhelmed by the stomach acid your stomach is  able to produce again naturally itself (hopefully). . . if taking betaineHCL jump started your ability to produce stomach acid again. . . if not taking betaineHCL (Powdered Stomach Acid) can replace what the body is missing much like taking a hormone. chris kresser has a good online article on this subject as well. https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ he says it well. quoting chris kresser. "If heartburn were caused by too much stomach acid, we’d have a bunch of teenagers popping Rolaids instead of elderly folks. But of course that’s the opposite of what we see." **** this is not medical advice but I hope it is is helpful. posterboy by the grace of God, 2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things".  
    • Lex_ I agree with Ennis_Tx. You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate. Magnesium Citrate are easiest to find. Take it 2/day for the first couple weeks to see how much more energy you have. Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work. If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams. And wake up with enough energy to take on the day. **** this is not medical advice but it really helped my chronic fatigue symptom's. It is good for leg cramps too also known as charley horse's. posterboy,
    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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