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My Son's Health Continues To Decline!
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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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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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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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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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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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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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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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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.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

http://www.nature.co...jg2012236a.html

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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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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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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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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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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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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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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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