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Any Ideas For These Symptoms Beyond Celiac

Mizzo

By Mizzo
in Food Intolerance & Leaky Gut

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Mizzo Enthusiast
Mizzo
Posted

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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frieze Community Regular
frieze
Posted

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 

cavernio Enthusiast
cavernio
Posted

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.

Mizzo Enthusiast
Mizzo
Posted
  • Author

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.

stri8ed Rookie
stri8ed
Posted

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 - Open Original Shared Link

 

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 - Open Original Shared Link

dilettantesteph Collaborator
dilettantesteph
Posted

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: Open Original Shared Link

 

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

Juliebove Rising Star
Juliebove
Posted
  • 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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  • 2 weeks later...
YoloGx Rookie
YoloGx
Posted

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.

  • 2 weeks later...
flowerqueen Community Regular
flowerqueen
Posted

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.

YoloGx Rookie
YoloGx
Posted

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

flowerqueen Community Regular
flowerqueen
Posted

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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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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