Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My Son's Health Continues To Decline!
0

15 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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?

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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. :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,698
    • Total Posts
      921,787
  • Topics

  • Posts

    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,704
    • Most Online
      3,093

    Newest Member
    Fbmb
    Joined