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Cara in Boston

Member Since 03 Feb 2011
Offline Last Active Dec 07 2014 04:22 AM
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#930765 Deciding To Pursue Genetic Testing - Helpful Or Not?

Posted by Cara in Boston on 15 September 2014 - 01:54 PM

There are also people who don't have the genes but still get celiac.  The genetic test actually slowed down our testing/diagnosis process.  The first MD we saw was skeptical that my son (then age 6) had it since he had no classic symptoms and was average height and weight.  He could not explain the positive blood tests, so he did a genetic test.  The genetic test indicated that he was not likely to develop celiac disease, so he concluded that he couldn't possibly have it.  (even though I tested positive too, and had ALL the classic symptoms.)  This doctor concluded that the initial positive blood test must have been a "lab error".

 

We continued looking and took him to the Celiac Center at Children's Hospital Boston.  They did an endoscopy and found extensive celiac damage.

 

So in this case, the genetic test results were very misleading.  His doctor at CHB doesn't even do them on anyone since they don't really tell you anything.  There are exceptions in both directions (some with genes DON'T get it.  Some without genes DO get it.)  I certainly wouldn't spend any money on it.


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#929930 New Here And Need Help With School Policy

Posted by Cara in Boston on 08 September 2014 - 05:35 AM

Our school is nut free (not to the extent of yours) so lots of our favorite snacks are out.  However, it is just one meal a day.  I send his lunchbox full of fruits, yogurt, mini kebabs made from ham and cheese, meatballs, veggies and dip, hummus, hard boiled eggs, etc.  Mostly foods that are naturally gluten free AND nut free.  Since I bake with mostly almond flour, I just don't send any baked goods in his lunch.  He is getting plenty of food and if he is hungry when he gets home, no problem.  If I need to add something more "filling", I do popcorn.  He also likes "flax muffins" (ground flax seed, eggs, brown sugar, baking soda, fruit) and those are very filling (just google it . . . many people on low carb diets love them)

 

I think you can come up with plenty ideas that will work.  It won't be as convenient as pre-packaged food, but it will work.  Get a bento-style lunch container so you can do a variety of foods.  We like Rubbermaid "lunchblox".  Great for dips, yogurt, salads, etc.


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#929168 Flying And Travelling With Celiac And Hotels, Etc

Posted by Cara in Boston on 02 September 2014 - 04:59 AM

We found the pre-packaged "lunches" from GoPicnic to be great for travel.  They are shelf stable, small, and light.  We had no problem getting them through airport security.  Check them out, they have several gluten free options.  My son even keeps a few at school and one in his backpack for "emergencies."

 

You can also get cards to print in different languages to explain your situation when eating out in a foreign country.  You can give it to the chef and they can help steer you to safe choices.  Due to cross-contamination, I would stick to naturally gluten free choices (steamed vegetables, salads, grilled meats without marinades, etc.) just to be safe.  You don't want to be sick while traveling.

 

We always bring some of our favorite cookies or some good chocolate when traveling.  I found that dessert was the hardest to find . . .


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#912777 Testing For Kids

Posted by Cara in Boston on 16 April 2014 - 07:47 AM

My youngest had it done at age 6.  I was a nervous wreck - had to send my husband with him.  He actually had a great time.  The staff at Children's was wonderful.  He got to play video games and joke around with the doctors and nurses.  He doesn't remember anything after picking a "flavor" for the gas.  He was up and about within an hour and seemed to have zero side effects once he got home.  

 

I wish they could have cleaned his teeth, cut his hair, done his nails, and all that other stuff while he was under as he is rarely sitting still.

 

My older son was actually jealous that he didn't get to have one.


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#911084 What Would You Do?

Posted by Cara in Boston on 01 April 2014 - 04:22 PM

Seems odd that your doctor is willing to do an endoscopy but not more blood tests.  My son was diagnosed at age 6.  He was negative on all the celiac tests except the TTG IgG and DGP IgG.  It was very confusing as his only symptom was behavior.  Similar to what you describe.  Complete meltdowns over seemingly insignificant things.  He was also very lethargic (laid around a lot, low energy) but I didn't really notice that until he got better and his energy returned.

 

I would try to have another (complete) celiac panel run to see if anything else comes up but the blood tests are not that reliable in kids.  If given the choice of endo now or wait it out . . . I'd do the endoscopy.  As nervous as I was, it turned out to be no big deal for Joe.  He actually had a pleasant time at Children's Hospital and returned home good as new.  Damage was found, so for us, we had an answer.

 

Be aware that a negative biopsy doesn't actually mean he does not have celiac.  I would put him on a gluten free diet after the biopsy (regardless of results) and see if you don't see improvement in three months.  Keep a record of symptoms . . . sometimes it is hard to see gradual changes.

 

Our changes were almost immediate.  Within days we had our happy kid back after almost 6 months of behavior so bad the whole family had to plan around the whims of one kid.

 

Best of luck to you.


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#909879 Interesting Info If You're Having Trouble With Pediatrician

Posted by Cara in Boston on 22 March 2014 - 01:14 PM

I think I posted this on another thread, but it seems relevant here too.

 

Younger son diagnosed with celiac by blood and endoscopy.

 

Older son tested too (no symptoms, but he is related . . .) and was negative on every blood test.  He did, however have weird striations on his teeth . . . our doctor at the celiac clinic ordered a endoscopy for him too, based on his teeth alone.  Our dentist had also never heard of the connection.

 

Older son was found to not have celiac and strangely, as he got older, his teeth seemed to fill in and we don't see the problem anymore.  His diet has changed significantly (our house is gluten free) but he still eats gluten pretty regularly out of the house.  Not sure if there was a connection or not.  I would describe his diet as "gluten lite."


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#909008 Hla Dq2//8 Negative Ttga Strong Positive Where To Now?

Posted by Cara in Boston on 15 March 2014 - 11:43 AM

Welcome to the board.

 

There is a good chance your son has Celiac Disease.  There is a documented connection between Celiac and Down's so there is a chance that this has no genetic connection whatsoever.

 

We were originally told that my son did not have celiac disease because his genetic test indicated he was at low risk . . . even though he had a positive blood test.  He had no symptoms other than a behavior change.  We took him to the Celiac Clinic at Children's Hospital Boston and he was found to be positive for celiac via biopsy.  The specialist we see there doesn't even do the genetic tests because they really don't tell you anything and they can actually lead you in the wrong direction.  

 

Lots of people without the common gene still go on to develop celiac . . . lots who do have the gene don't . . . so there you go.

 

I would bet that with the Down's Syndrome and the high TTG IgA your son has celiac.


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#908324 Need Advice About What To Ask For

Posted by Cara in Boston on 08 March 2014 - 07:16 AM

Me again . . .

 

My older son tested negative on all the blood tests (when I had the whole family tested after younger son's diagnosis).  Our doctor (a celiac specialist) still requested he have an endoscopy because he had strange discolorations on his teeth.  His biopsy was negative too . . . and now, a few years later, his teeth seem completely normal.  He is not gluten free, but eats about 80% less than he used to eat.

 

Our dentist knew ZERO about Celiac Disease or the symptoms related to teeth.  She barely knew anything at all about Celiac Disease.


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#907732 Need Advice About What To Ask For

Posted by Cara in Boston on 02 March 2014 - 01:41 PM

I think I responded to another one of your posts, so I hope I don't repeat myself.

 

I agree with everyone else that you should insist on a full blood panel (or just the missing tests) before the house goes gluten free.  But even then, kids can have negative blood tests (and a negative biopsy) and STILL have celiac disease.  But you are right, if you can confirm it with medical tests, it will be easier to stick to the diet and require others (school, camp, college, etc.)  to be just as strict.

 

I am betting you see a HUGE improvement when everyone is gluten free.  My son's behavior went from absurd (we basically couldn't go anywhere because he was so unpredictable . . . the slightest frustration would set him off and no consequence seemed to matter.  He was really quite irrational.) to "typical 5 year old boy within days of going gluten free.  He is no angel, but our behavior problems are what I would expect every family to deal with.  

 

Even if everyone seems to be negative, keep in mind that celiac can be "triggered" at any time in your life so ongoing testing is needed.  Our doctor (at the Celiac Clinic at Children's Hospital Boston) recommends my other son being tested (blood panel) every two years . . . sooner if we start to see symptoms.  Even though I only cook gluten free, he is still eating gluten outside of the house.

 

Good luck.  Be firm.  Tell the doctor you need this done for peace of mind, you will forever worry if you don't know for sure.  That can't be healthy, right?


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#907385 Am I Doing The Right Thing?

Posted by Cara in Boston on 27 February 2014 - 07:26 AM

Both my son (6 at the time) and I went gluten free together.  He transitioned fine, no problem.  I had terrible "withdrawal" symptoms . . . sometime they were as bad or worse than my gluten symptoms.  It lasted a little over a week and then gradually (very gradually) got better.  It was such a wonderful surprise when I had to actually stop and think about when I last felt weird.  My GI symptoms were the first to disappear.  Then the fatigue and brain fog, then, over time, the anxiety.  It was two or three months before I could confidently say I no longer felt anxious . . .

 

Just be patient.

 

I would also steer clear of the processed, gluten free foods while you are healing.  They are great as a treat, but not as a main part of your diet.  Stick with real, naturally gluten-free foods like meat, fresh vegetables, fruit and nuts.  It might even be helpful to read a few Paleo cookbooks . . . they are grain free, which I found to be even more helpful in the beginning.  I've never felt healthier or more energetic then when I was completely grain free.


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#906271 2 Drs Said They Are 95% Sure My Son Is Celiac, Another Dr Said No. Said No To...

Posted by Cara in Boston on 17 February 2014 - 10:15 AM

My son was negative on all tests except the IgG tests.  He was not deficient in IgA.  Our first doctor said he didn't have it because his IgA tests were fine and he was average height and weight and had no GI symptoms.  However, he could not explain why my son had such high IgG numbers (lab error?) and by that time, I had also tested positive for celiac so it was too much of a coincidence.  This doctor told me I had "read too many magazines" . . .

 

I didn't give up.  Took him to Children's where they have a special Celiac unit and his new doctor agreed that he should have further testing.  His biopsy was "very positive"

 

Strangely, my biopsy was negative so go figure . . . we both clearly have celiac disease and the gluten free diet has helped us immensely.

 

Trust your instincts.


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#904996 What Do You Keep At School?

Posted by Cara in Boston on 04 February 2014 - 10:09 AM

Our box has a variety of treats and snacks.  Sometimes the class is having a "healthy" snack (like during testing, they hand out granola bars) so I make sure to have some snack foods available too.  Our box has m&m's, snickers, skittles, doritos, pretzels, applesauce, KIND bars, and Lara bars.  (The school is not nut-free).  We also have GoPicnic meals available if needed.

 

The last two birthday parties, the birthday kid remembered Joe and brought a pack of m&ms for him.  He loved being included and even though they were the exact same thing as the ones in his snack box, he enjoyed them more.  I love it when kids and thoughtful and kind.

 

Cara


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#904850 Genetic Testing For Children?

Posted by Cara in Boston on 03 February 2014 - 07:31 AM

My son had the genetic test and was found to have a "low probability" . . . this led the doctor to conclude that he DID NOT have celiac disease (no classic symptoms, target size/weight, positive and negative blood test results)   His doctor could not explain the positive blood tests.  Said it might be a "lab error."   By that time, I had tested positive for Celiac too, so we found a new doctor.  He had an endoscopy and was found to have extensive damage.

 

So this is a case where he DIDN'T have the genes, but DID have celiac.  His new doctor (at the Celiac clinic at Children's Hospital Boston) doesn't even do the genetic tests because it doesn't really tell you anything.  You may or may not develop celiac if you have the genes, you may or may not develop celiac if you don't have the genes.  Waste of time and money and potentially misleading.


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#904847 Need Ideas For High Protein Smoothies For A Child

Posted by Cara in Boston on 03 February 2014 - 07:07 AM

not super high in protein, but can she eat peanut butter?

 

My older son loves peanut butter smoothies.  I do plain or vanilla coconut milk, a frozen banana or two, a big scoop of peanut butter, sometimes I add some ground flax seed.


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#881749 7 Weeks Joint Pain - Only Symptom

Posted by Cara in Boston on 29 July 2013 - 10:20 AM

Many people infected with Lyme go months (or even years) without being diagnosed.  They don't remember a tick bite, they didn't get (or didn't notice) the rash associated with it.  Frequently they are misdiagnosed with other "syndromes" (chronic fatigue, fibromyalgia, etc.) and given meds to relieve the symptoms, but the illness is still there.  I found the process of getting diagnosed VERY SIMILAR to when we were going through the celiac diagnosis.  Even the symptoms (for us) were similar!  My son's blood tests were inconclusive (again, a lot like celiac), luckily he DID get the rash and I had saved a picture of it.  Otherwise we may never have figured it out.

 

We got it and we live in the city, don't camp or hike, no woods around, never seen a deer anywhere near our house.  No idea where he got bit.

 

Best of luck to you -

 

Cara


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