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New Here And Need Help! 8-Year-Old Daughter So Many Symptoms Even Though We Stopped Gluten Five Days Ago

stop gluten child scope testing

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#16 GFinDC

 
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Posted 15 November 2013 - 09:45 AM

Hi,

 

Don't be real scared, celiac is one condition that can be managed well by diet alone.  That means it is pretty much under your and your daughter's control.  The scary part comes when people who don't take it seriously and cheat on the gluten-free diet or ignore cc (cross-contamination) issues.  It is not unusual for it to take years for people to be diagnosed with celiac disease.  I think they used to say average was 9 years but it may be more like 7 or 8 years for diagnosis now.  So you are getting it figured out faster than the average, which is good.  The more serous complications that can arise with celiac are mostly from long term consumption of gluten over years of time.  Basically not following the gluten-free diet for years.  Ongoing inflammation and mal-absorption are two of the big causes of problems there.  I doubt very much you are planning to ignore the gluten-free diet for years at a time.

 

Some of the tips below won't apply to her case, but most will.  Testing for everyone is important, even if they don't have GI symptoms.  Many people with celiac disease don't have GI symptoms, so it is not wise to assume that without them there is no problem.  Celiac is inherited, or the genes are anyhow, so it came from somewhere in the family tree.  It might help to think about illnesses in grandparents/ aunts/uncles on either side.  Autoimmune diseases maybe more prevalent in one family than the other.  If so, that is probably the family where the genes came in.  And that family may have other celiacs in it too.  Possibly undiagnosed celiacs.

.

 

Some starting the gluten-free diet tips for the first 6 months:
 
Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.
 
Helpful threads:
 
FAQ Celiac com
 
Newbie Info 101
 
What's For Breakfast Today?
 
What Did You Have For Lunch Today?
 
What's for dinner tonight chat?
 
Dessert thread
 
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

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#17 worriedseattlemom

 
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Posted 01 December 2013 - 09:40 PM

Update: Hi all! Not that you were waiting breathlessly for my update, but here's what we've learned: Claire tested negative for her TTG, but her GI doc said that's only because she's IgA deficient. If she weren't IgA deficient, the doctor believes her TTG would be positive (like I mentioned before, Claire has tested positive numerous times on a more sensitive test that a T1 diabetes study she's in uses (she has the gene for Type 1, but not diabetes at this point). Her D-eamidated gliadin test came back high at a 27, which her doctor said is a marker for celiac.

 

She also tested positive for Hashimoto's Thyroiditis, both on a blood test and with an ultrasound. We are now trying to figure out if we should have her scoped. Seems pretty clear that she has celiac and I hate to do any unnecessary testing, but it would be nice to see how much damage she has down there. She hasn't been complaining about stomach pain as much lately, but is queasy most days. She's been "gluten free" for about 3 weeks, but that doesn't take into account any mistakes I have been making. My awareness gets better each day, but I do worry about cross-continamination issues. I'm very careful, but who knows if she's still getting microscopic amounts.

 

Anyone have advice on the scoping? It's so hard to make your kid go under general anesthesia, but also hard to watch them sick without knowing exactly what's going on in their gut.

 

Thanks!

Angie


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#18 cyclinglady

 
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Posted 01 December 2013 - 10:47 PM

You are making progress! Yeah!

When will she get scoped? She really needs to continue to consume gluten until all testing has been completed. I would hate for the biopsy to be negative and then have her go back on gluten only to have her get sicker. You would hate to trip that diabetes gene by not complying or addressing celiac disease issues. I don't know if that would happen but one autoimmune disease typically leads to another. Please talk to your doctor about this and check out the University of Chicago's Celiac website about testing protocol. if the doc is willing to DX her without the biopsies, then keep her gluten free.

Search the forum for tips/advice about scoping kids. I have Hashi's and it has been manageable (except for the last year or so when I was not yet diagnosed with celiac disease.

Keep us posted and take care of yourself, Mom!
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#19 GFinDC

 
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Posted 02 December 2013 - 11:16 AM

Hi,

 

Since she is off gluten, it is going to be important to do the endoscopy right away.  The damage will be healing and the tests are not any use if there is no damage to test.  If it is going to be more than a few more days, I suggest putting her back on gluten for now, until the tests are completed.

 

Some reasons to consider going ahead with the endoscopy:

 

She is going to live with the condition for the rest of her life.  So it makes sense to try and be positive of the diagnosis.

 

Schools may be more willing to accommodate her condition if she is diagnosed.

 

Clinical trials generally require biopsy confirmed celiac to participate.  That is not a big concern for most people tho.

 

It may be easier for her to stick with the gluten-free diet if she knows she was fully diagnosed.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#20 Gemini

 
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Posted 02 December 2013 - 12:44 PM

Update: Hi all! Not that you were waiting breathlessly for my update, but here's what we've learned: Claire tested negative for her TTG, but her GI doc said that's only because she's IgA deficient. If she weren't IgA deficient, the doctor believes her TTG would be positive (like I mentioned before, Claire has tested positive numerous times on a more sensitive test that a T1 diabetes study she's in uses (she has the gene for Type 1, but not diabetes at this point). Her D-eamidated gliadin test came back high at a 27, which her doctor said is a marker for celiac.

 

The DQ-2 gene for Celiac is also the gene for Type 1 diabetes so your daughter may never trip for diabetes fi she remains strictly gluten-free. Many people do not know this but the doctors should have.  I am totally blown away that you were advised to keep her on a gluten diet with her history and these idiots are guilty of malpractice.  Unbelievable.

 

What more sensitive test was done that was positive for Celiac, that is used for a Type 1 diabetes study?  I apologize if I got that wrong but I am really interested in what that test is.  I have Celiac and Hashi's and my brother is a Type 1 diabetic who I strongly believe has Celiac also but he has stupid doctors that tell him no.

 

I won't give my opinion on the biopsy because she's your child and you get to make that decision. But please know that Celiac is pretty easily managed, once you get the hang of it and your daughter will want for nothing, food wise.  There is no better time to be gluten free. If you do decide on the biopsy, I would still have her go gluten-free right away and never eat gluten again. She has already tripped for Hashi's and you don't want her to end up with Type 1 diabetes.  She has a diagnosis already and any biopsy done will just be to check for damage.  If they haven't diagnosed her based on all you told us, then you need new doctors right away!

 

Be patient...your daughter will be fine but it will take awhile for all the symptoms to go away.  :)


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#21 worriedseattlemom

 
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Posted 02 December 2013 - 10:09 PM

Thanks once again for your amazing support! I'm not sure what the test is that they use in her T1 study. I can ask for more info on that, though. I would love to be able to provide that information. The GI doc here in Seattle did say that all of the kids who come out of this study, if they test positive for celiac in the study, they are ALWAYS positive. In her experience.

 

I do plan on keeping Claire off gluten forever, now. I never want her to have to go through feeling this way again. It breaks my heart that she is constantly queasy, but is still having to function. Her energy level and appetite are good, so I believe it's a low level nausea, but still unpleasant for her.

 

I think you're all convincing me to do this scope....


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#22 Gemini

 
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Posted 03 December 2013 - 07:57 AM

I had nausea for years and it completely resolved on the gluten-free diet.  Never came back, unless I am accidentally glutened but that is a rare occasion at this point.

 

It's not surprising that the kids in a Type 1 study might be positive for Celiac.  Type 1 diabetes, Hashi's thyroid disease and Rheumatoid Arthritis are the 3 BIG autoimmune diseases closely asscoiated with Celiac. There are others also but these 3 occur more often with Celiac than any other.  I am guessing it has a genetic component to it.

 

You could always see how your daughter does on the gluten-free diet and if she does not improve enough after a set amount of time, then you scope to see if there is a reason why.  But most people do fine on the diet and have continued improvement over time.  I went with that scenario because I was deathly sick at time of diagnosis and didn't fancy a scoping. The nausea thing was a huge problem for me.  I never ended up having it done because I did so well on the diet and 8 years later, still feel great. My stomach is no longer the focal point of my existence.  It rarely give me grief anymore.

 

Good luck!


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#23 worriedseattlemom

 
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Posted 03 December 2013 - 05:51 PM

That is so great to hear, Gemini. Thank you for sharing that.

 

We've decided against the scope for now. I scheduled it today, then they called back to say she would need to gluten load for two weeks and then be scoped. I just can't take that step backward with her right now. We're on the right path I feel and I don't want her to feel terrible for however much longer just so we can get a totally bulletproof diagnosis.

 

I did get her test results from the study she has been in. Maybe someone can help me decipher? I can't figure out what they mean, though the study director said they are a high titer.

 

5/16/2012 Iga Transglutaminase 0.352

12/1/2012  "            "                   0.120

5/4/2013    "            "                   0.226

10/11/2013 "            "                  0.433

 

Anyone?


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#24 frieze

 
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Posted 04 December 2013 - 01:59 AM

That is so great to hear, Gemini. Thank you for sharing that.

 

We've decided against the scope for now. I scheduled it today, then they called back to say she would need to gluten load for two weeks and then be scoped. I just can't take that step backward with her right now. We're on the right path I feel and I don't want her to feel terrible for however much longer just so we can get a totally bulletproof diagnosis.

 

I did get her test results from the study she has been in. Maybe someone can help me decipher? I can't figure out what they mean, though the study director said they are a high titer.

 

5/16/2012 Iga Transglutaminase 0.352

12/1/2012  "            "                   0.120

5/4/2013    "            "                   0.226

10/11/2013 "            "                  0.433

 

Anyone?

what are the "norms" for this test?


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#25 worriedseattlemom

 
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Posted 04 December 2013 - 11:05 AM

what are the "norms" for this test?

That's what I wasn't sure of, but I just found out that anything over .05 is positive, so....yah....she's tested very high.


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#26 frieze

 
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Posted 05 December 2013 - 03:33 AM

That's what I wasn't sure of, but I just found out that anything over .05 is positive, so....yah....she's tested very high.

thanks, and...geesh!


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#27 Tracey231

 
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Posted 13 December 2013 - 02:44 AM

Hi Worried Seattle Mom

 

I know that you are focused on your daughter at the moment, and that going gluten free is scary(!) but please consider putting your son on a gluten free diet also. I say this because I have had a lot of food intolerances - Dairy, Egg, fruit, fizzy drink, etc, but after going gluten free for 4 months, I now can eat these things - and I feel better. Even if he does not have Celiac, there is a strong possibility that he is gluten sensitive, (keeping your daughters journey in mind also) and that this is causing his other intolerances. I understand that it can take a year or more for the gut to heal enough to be able to eat these previously not tolerated foods (and it depends on the reaction that he has to them whether you want to risk them) In my experience being Gluten free is a lot more liberating than the other intolerances, and although a bit of a learning curve - if you are already doing this for you daughter, then maybe try for your son too?

 

Also - I completely understand your position with regards to the biopsy and having to continue the gluten with your daughter. However... this is the best chance you will have to have the definitive result that many people with Celiac find helps them stay completely gluten free for the rest of their life. Two more weeks of pain now, could prevent 3 months or more in the future, and even then the result will never be as strong. 

 

Best of luck with your journey - is is horrible when family members are ill:(


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#28 pricklypear1971

 
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Posted 13 December 2013 - 08:32 AM

Whew.

So what are they doing for her thyroid? As someone with both celiac and hashis I can attest that the symptoms overlap greatly, and the hashis can make her more miserable than the celiac (after she's gluten-free).
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