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Any Ideas For These Symptoms Beyond Celiac
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My 10 yr old (Celiac and gluten free 3 yrs) has been experiencing these symptoms along with occasional mood swings. the headaches and body pains usually go together and the low grade fever ( 99.0- 99.5) has been intermittent. She sometimes has fast mood swings and anxiety too. 

 

She was dx with Hashimota's disease but her TSH level went from 8.8 to 5.5 in 3 wks (avg 0.5-5.3) so Dr says she does not need meds just to watch for fatique, weight gain other symptoms

 

I started a food diary but it's too soon to be sure of anything. I stopped Artificial sweeteners to be safe. 

 

Mood swings and anxiety was dx as results of Pre-pubescent and school worries. Based on how and when she has them I can see this as good possibility.  

 

But with all her other symptoms I am just wondering about Soy , Casein etc...

 

Headaches, fevers and body aches are 4-6x week.

 

Anyone experience these symptoms with food allergies ? 

 

thoughts appreciated 

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I would get a second opinion on the hashis

My 10 yr old (Celiac and gluten free 3 yrs) has been experiencing these symptoms along with occasional mood swings. the headaches and body pains usually go together and the low grade fever ( 99.0- 99.5) has been intermittent. She sometimes has fast mood swings and anxiety too. 

 

She was dx with Hashimota's disease but her TSH level went from 8.8 to 5.5 in 3 wks (avg 0.5-5.3) so Dr says she does not need meds just to watch for fatique, weight gain other symptoms

 

I started a food diary but it's too soon to be sure of anything. I stopped Artificial sweeteners to be safe. 

 

Mood swings and anxiety was dx as results of Pre-pubescent and school worries. Based on how and when she has them I can see this as good possibility.  

 

But with all her other symptoms I am just wondering about Soy , Casein etc...

 

Headaches, fevers and body aches are 4-6x week.

 

Anyone experience these symptoms with food allergies ? 

 

thoughts appreciated 

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Symptoms sound like me pre-gluten free. I still experience some of them. My thyroid seems to be fine though.

 

It sounds like she has an infection of some sort, not that I have any clue, but I think it's time to push your doctor into looking more in depth. It sounds like this has been going on for awhile, and is definitely not the sort of thing to let pass under the radar, especially in a 10 year old.

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We are following up with a Neuro and  Rheumatologists in May (earliest appt) but since none of the Dr's want to discuss food related potentials (I think because they don't understand them) I was curious if there are others out there with this happening. In the meantime I will plug away at the food diary and watch out for things.

 

BTW we had 2 Dr./tests on the thyroid both in confirmation she has Hashimota's but that her recent numbers are too low to warrant meds.

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My 10 yr old (Celiac and gluten free 3 yrs) has been experiencing these symptoms along with occasional mood swings. the headaches and body pains usually go together and the low grade fever ( 99.0- 99.5) has been intermittent. She sometimes has fast mood swings and anxiety too. 

 

She was dx with Hashimota's disease but her TSH level went from 8.8 to 5.5 in 3 wks (avg 0.5-5.3) so Dr says she does not need meds just to watch for fatique, 

weight gain other symptoms

 

I started a food diary but it's too soon to be sure of anything. I stopped Artificial sweeteners to be safe. 

 

Mood swings and anxiety was dx as results of Pre-pubescent and school worries. Based on how and when she has them I can see this as good possibility.  

 

But with all her other symptoms I am just wondering about Soy , Casein etc...

 

Headaches, fevers and body aches are 4-6x week.

 

Anyone experience these symptoms with food allergies ? 

 

thoughts appreciated 

 

Yes. When I consume a food im allergic to, amongst other symptoms I do experience mood swings, irritability, and headaches.

 

There is a simple way to find out whether these symptoms are indeed being caused by a food allergy. Temporarily replace the diet with only foods she has never eaten before. It is highly unlikely she will react to a food she has never consumed before. This way if the symptoms subside within a week or so, you can be fairly confident she is reacting to foods in her diet, and then you can slowly re-introduce the foods, and watch carefully for adverse reactions. This is essentially an elimination diet. See - http://en.wikipedia.org/wiki/Elimination_diet

 

It is not uncommon for people with celiac to have a "leaky gut" as well. When one has a leaky gut, it is possible to become "allergic" to any food consumed, since the undigested proteins can leak into the blood, and elicit an immune response. There are test available which can test for leaky gut - http://www.gdx.net/product/10122

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I just posted about this in another thread.  Do you know that the symptoms are beyond celiac?  Why not discuss this study with your son's doctors?

 

There is a Fasano study published in a peer reviewed journal with where celiacs still experiencing symptoms on a normal gluten free diet were treated with a gluten contamination elimination diet of whole unprocessed foods: http://www.biomedcen.../13/40/abstract

 

That is what I did to eliminate my symptoms and those of my son.

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  • Is she seeing an Endo.?  If not, I would go that route.  My daughter has Hashimotos and her Pediatrician did not have her on the right dose of thyroid med.  She does not have food allergies but intolerances.  Only rarely has fevers and usually accompanied by some kind of illness but she does get ill all the time.

I had a thyroid problem and I had mood swings.  Was easy to anger and had anxiety like symptoms.  But...  It was because I was on the wrong dose of thyroid med.  An out of whack thyroid can cause many problems.

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Just want to say these last two years I discovered that besides  having celiac I also have a high degree of sensitivity to a variety of other food chemicals namely: salicylates, tannins, amines and oxalates. These are not allergies, instead they are sensitivities, which INHO unfortunately are largely ignored by both sides of our medical establishment in the USA. 

 

Nevertheless, IMHO they can cause problems that greatly aggravate the quality of one's life and can, if left ignored, create more severe problems down the road--not to speak of skin and breathing conditions, and learning, behavioral and neurological problems (including migraines and myoclonus), especially if these sensitivities combine with either more limited or severe gluten intolerance.

 

I have found a good support group and info on the salicylate sensitivity forum which covers more than just salicylate sensitivity these days. There is a lot of information too about this coming out of Australia, notably Sue Dengate's food and chemical sensitivity site plus her books on the subject (she won the woman of the year award in Australia recently), as well as the RPAH Failsafe diet.

 

Feingold here in the USA also in a more limited manner covers some of this, plus there is the oxalate info site and trying low oxalate yahoo group which comes from a medical researcher in  Texas, and various information coming out of parents concerned about their autistic or ADHD (or ADD) children (which also affects adults too of course).

 

This kind of information is often not mentioned in the US, but IMHO I have discovered these conditions are not as rare as I first thought--despite our medical establishment seemingly at least lagging behind.

 

I also wanted to mention that it seems like many folks here who have thyroid problems discover that their condition improves if they have been gluten free for some time. I have a friend who still has to take thyroid medicine for instance, but his supposedly "never to get better" Hashimotos' diagnosis went away--so his thyroid is getting better rather than deteriorating more as was originally expected.

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I've had my thyroid medication reduced twice since becoming gluten free. I didn't realise so many other people did too!

Just want to say these last two years I discovered that besides  having celiac I also have a high degree of sensitivity to a variety of other food chemicals namely: salicylates, tannins, amines and oxalates. These are not allergies, instead they are sensitivities, which INHO unfortunately are largely ignored by both sides of our medical establishment in the USA. 

 

Nevertheless, IMHO they can cause problems that greatly aggravate the quality of one's life and can, if left ignored, create more severe problems down the road--not to speak of skin and breathing conditions, and learning, behavioral and neurological problems (including migraines and myoclonus), especially if these sensitivities combine with either more limited or severe gluten intolerance.

 

I have found a good support group and info on the salicylate sensitivity forum which covers more than just salicylate sensitivity these days. There is a lot of information too about this coming out of Australia, notably Sue Dengate's food and chemical sensitivity site plus her books on the subject (she won the woman of the year award in Australia recently), as well as the RPAH Failsafe diet.

 

Feingold here in the USA also in a more limited manner covers some of this, plus there is the oxalate info site and trying low oxalate yahoo group which comes from a medical researcher in  Texas, and various information coming out of parents concerned about their autistic or ADHD (or ADD) children (which also affects adults too of course).

 

This kind of information is often not mentioned in the US, but IMHO I have discovered these conditions are not as rare as I first thought--despite our medical establishment seemingly at least lagging behind.

 

I also wanted to mention that it seems like many folks here who have thyroid problems discover that their condition improves if they have been gluten free for some time. I have a friend who still has to take thyroid medicine for instance, but his supposedly "never to get better" Hashimotos' diagnosis went away--so his thyroid is getting better rather than deteriorating more as was originally expected.

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Glad to help you get more perspective on this issue concerning one's thyroid, FlowerQueen!

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Yes, thank you Yolo. It's amazing how all these things are inter-linked. I love this forum as everyone helps each other, we have nothing anywhere near as good in UK!

Glad to help you get more perspective on this issue concerning one's thyroid, FlowerQueen!

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    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
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