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My Son's Health Continues To Decline!


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14 replies to this topic

#1 CeliacDad55

 
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Posted 03 September 2012 - 10:12 AM

My son is 11 yo, diagnosed w. celiac disease 4 months ago. His symptoms began suddenly in early January after taking antibiotics for strep(possible trigger?). He has been unable to attend school since January, suffering from weakness, nausea, joint pain, mental fogginess and fatigue. Our house has gone gluten free, and we are confident gluten isn't sneaking into his diet.

My wife and I are sick with worry - not only is he not getting better, he is declining! He can't do much but lie in bed most of the day. His legs hurt him, he has little appetite, and all of the things that he used to LOVE doing don't get him going anymore. We have been back in touch with his pediatric GI doc several times but they don't have any more suggestions. Many visits later, we have a new pediatrician and he doesn't have much to offer but better diet - and that hasn't made a difference either. We have seen a dietitian, and my son has been to a therapist as well, depression isn't the issue. He has had tests to rule out common other diseases like diabetes, and we tried the Specific Carb Diet to see if that would help, but it didn't.
By the way, we had the rest of the family screened for celiac in the wake of this, and biopsy revealed my older son has celiac too, but he has had only mild symptoms compared to my younger son.
We want our son to get better! We want our curious, lively, gifted student son back. THERE MUST BE SOMETHING ELSE GOING ON! WHAT IS IT?
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#2 pricklypear1971

 
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Posted 03 September 2012 - 10:42 AM

I assume they checked vitamin levels, too like iron (complete panel), b's, d3? Did they screen him for Hashimoto's Thyroiditis (not just TSH but for antibodies)?

Have you tried eliminating dairy or other common allergy groups to see if he has another food issue in conjunction with Celiac?

Some people seem to get worse before better.

I know it's frightening to see this happening to your child.

Does he give any insight as to what makes him feel better or worse?
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#3 eatmeat4good

 
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Posted 03 September 2012 - 10:52 AM

Check that the gluten free products you are using are in fact made in a dedicated facility or are Certified Gluten Free. Not everything labelled gluten free is really gluten free. My son tested positive for antibodies after two years of being gluten free and we thought we were very strict. Now it is only Certified Gluten Free and those will be used minimally for treats. Many products say Gluten Free on the front and on the back they say made in a facility that also processes wheat. Some Celiacs need to eliminate these products in order to heal. There may be something else going on too, but this is one step you can take if you haven't already. I am stunned at how little gluten it takes to cause shockingly severe symptoms. I hope your son gets better soon. I'm sure you will get other suggestions soon. Maybe other food intolerances?
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#4 ciamarie

 
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Posted 03 September 2012 - 12:12 PM

Since you mentioned that it seemed to start or be triggered by a round of antibiotics, and you also mentioned that you tried SCD I suspect you've tried probiotics and/or yogurt, but just in case I thought I'd throw that out as a possibility, in addition to the other responses.
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#5 Takala

 
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Posted 03 September 2012 - 12:47 PM

Test for Lyme disease, but....

Strep can trigger all sorts of crap. Like OCD behaviors. But this fatigue/head fog stuff sounds like chronic Epstein- Barr, caused by a virus. It is possible to be unlucky enough to have had both at the same time, or have one after the other.
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#6 bartfull

 
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Posted 03 September 2012 - 01:08 PM

Do you live near a Mayo clinic? I know some are better than others but the one in Rochester Minnesota is the best. I have known people who had things nobody else could figure out and when they went to Mayo, THEY found out. AND they take payments. :)
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#7 Kansas

 
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Posted 03 September 2012 - 04:23 PM

If his health is still declining, I would go completely WHOLE foods, only. I would also suggest no dairy and no soy. I know how having a sick kid can make you feel, my prayers and thoughts are with you.
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#8 GFinDC

 
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Posted 04 September 2012 - 06:16 AM

I'm sorry he isn't doing better yet. Like the previous poster said, whole foods are the way to go. It is also important to check vitamins and meds for gluten, and tea, coffee, and sodas. Once you have switched him to a total whole foods diet with no processed foods, if there is no improvement in a month, then it may be time to look at other foods that can cause reactions. Soy, nightshades, dairy, eggs, corn, oats etc. About 10% of celiacs have am immune reaction to oats.

A simple diet with few ingredients is easier to troubleshoot than a complicated diet with many ingredients. If it means eating the same kind of meals for weeks then that is ok, as long as it makes an improvement. It's easier to add safe foods to a limited diet (and better) than to remove suspect foods one at a time.

Have his antibodies gone down since he started the gluten-free diet? They should get lower after a while.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
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 digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


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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

#9 Nyobi's Mom

 
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Posted 04 September 2012 - 08:30 AM

Do you live near a Mayo clinic? I know some are better than others but the one in Rochester Minnesota is the best. I have known people who had things nobody else could figure out and when they went to Mayo, THEY found out. AND they take payments. :)


I second this advice. It sounds like its time to go to a major medical clinic/ childrens hospital and DEMAND answers.
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#10 Cara in Boston

 
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Posted 04 September 2012 - 10:22 AM

We had a similar situation and it did in fact, turn out to be LYME.

Joe was diagnosed in March, went gluten free, felt better (it was like we had a new kid!) and several months later he started having symptoms again. His GI and I went through everything in his diet. We stopped eating out, we stopped eating any processed foods that although gluten-free, may have been contaminated in processing, we bring our own food everywhere. This summer he got much worse, missing school, camp, and even some baseball games (we knew he was sick then, nothing keeps him from baseball.) His pediatrician was equally puzzled and sent us to physical therapy (joint pain?), psych (depression?) and everything in between and nothing fit. Finally he asked if we ever went camping or hiking (NO) and I remembered a weird bite he had last summer. I happened to take a photo of it (it was a large, round, "bulls-eye" rash on his back) and so I sent it to the doctor. He called us back in immediately to start him on antibiotics right away (and do more tests).

The rash is diagnostic for Lyme Disease. Not everyone gets the rash, and many don't ever see the tick at all or remember a bite.

His blood tests came back negative for Lyme, but that it not unusual.

His Lyme symptoms and his celiac symptoms are almost identical. Fatigue, joint pain, stomach ache, just generally feeling crappy. He never had a fever.

We are still in the first few weeks of this new diagnosis so I don't know that much. We are going to a specialist tomorrow at Children's Hospital.

So far, getting diagnosed with LYME is reminding me a whole lot of the process we went through with his celiac. Tests not reliable, doctors have differing opinions, not all doctors are very informed, etc.

He went for a whole YEAR complaining and we kept searching for the gluten . . . it happens. Poor kid hasn't felt well in about 2 years.

Cara
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#11 CeliacDad55

 
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Posted 04 September 2012 - 11:04 PM

Thank you all for the thoughtful replies. I have read each one carefully and will be going to our pediatrician again on Friday. We have really worked on natural, whole foods, probiotics, etc pretty hard, but it hasn't seemed to help. His anti bodies have come WAY down (from 120 or so to 25 for the key level). We have been pretty obsessive with avoiding gluten.

I want to check on Hashimotos thyroiditis, although the symptoms aren't a perfect match, they do match somewhat.
Also Lyme's. I believe he was neg. for an initial test, but I will have him checked again. We are out in the woods a good bit and he has had tick bites. We live in Oregon, so Mayo clinic would be hard, but you gotta do what you gotta do. There is a celiac center at Stanford (San Francisco) I may contact, and one at the Children's Hosp in Philadelphia. I have family near Philly so could stay with them if needed. Again, thank you for taking the time to offer your suggestions - I feel less alone in this struggle now! Dave
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#12 CeliacDad55

 
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Posted 04 September 2012 - 11:11 PM

Cara - Thanks for the reply. Joe's situation sound much like Sam's. Normally Sam exhausted me with his constant questions and desire to go do stuff like fishing, hiking, etc but he just can't do it anymore. I miss my kid! Good luck. Dave

We had a similar situation and it did in fact, turn out to be LYME.

Joe was diagnosed in March, went gluten free, felt better (it was like we had a new kid!) and several months later he started having symptoms again. His GI and I went through everything in his diet. We stopped eating out, we stopped eating any processed foods that although gluten-free, may have been contaminated in processing, we bring our own food everywhere. This summer he got much worse, missing school, camp, and even some baseball games (we knew he was sick then, nothing keeps him from baseball.) His pediatrician was equally puzzled and sent us to physical therapy (joint pain?), psych (depression?) and everything in between and nothing fit. Finally he asked if we ever went camping or hiking (NO) and I remembered a weird bite he had last summer. I happened to take a photo of it (it was a large, round, "bulls-eye" rash on his back) and so I sent it to the doctor. He called us back in immediately to start him on antibiotics right away (and do more tests).

The rash is diagnostic for Lyme Disease. Not everyone gets the rash, and many don't ever see the tick at all or remember a bite.

His blood tests came back negative for Lyme, but that it not unusual.

His Lyme symptoms and his celiac symptoms are almost identical. Fatigue, joint pain, stomach ache, just generally feeling crappy. He never had a fever.

We are still in the first few weeks of this new diagnosis so I don't know that much. We are going to a specialist tomorrow at Children's Hospital.

So far, getting diagnosed with LYME is reminding me a whole lot of the process we went through with his celiac. Tests not reliable, doctors have differing opinions, not all doctors are very informed, etc.

He went for a whole YEAR complaining and we kept searching for the gluten . . . it happens. Poor kid hasn't felt well in about 2 years.

Cara


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#13 nvsmom

 
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Posted 05 September 2012 - 07:29 AM

Your poor guy. Best wishes to him and your family.

I was recently diagnosed Hashimoto's, and in my flurry of resultant research, I've come to think it's underdiagnosed. Ideally you want a TSH between 0.5 and about 2.0 although "normal ranges can be as wide as 0.2-6.0. A marginally high TSH, along with higher thyroid peroxidase antibodies (TPOAb) could show hashimotos even if the T4 hormone is normal... I bring this up because I found that my energy didn't improve in the slightest after being gluten-free for over 2 months, it was a relief to know it was a thyroid problem and I could possibly fix it.

Good luck.
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#14 GFinDC

 
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Posted 06 September 2012 - 12:21 PM

Hi,

I forgot to add some brand names. Here are a couple ice cream replacements that may work for him.

So Delicious Coconut ice cream


Simply Enjoy Sorbet
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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

#15 ryebaby0

 
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Posted 07 September 2012 - 11:55 PM

This is similar to my son's course of diagnosis -- first dx with juvenile rheumatoid arthritis, then celiac. The gluten free diet did not improve his health, but people told us to be patient and wait. It was a dietician who insisted he be hospitalized and there he was dx additionally with something called autoimmune enteropathy. Basically, an misguided attack on his gi tract, launched by his immune system in error. We got a second opinion at Johns Hopkins. AE is treated with the same drugs they use for transplant patients -- there is no cure. Another thought is that he may need zinc supplements. Unchecked celiac will deplete zinc, and you need that to absorb nutrients and cells need it to grow.

Anyway. Get yourselves to a doctor as soon as you can. Get a blood test and check his basic nutrient uptake. Start a food diary, because they will be sure you are just missing the gluten in his diet. Post what he eats here, and maybe someone will see something. But make an appointment at any major medical teaching hospital.
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton




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