Gluten overload

[lucylocks]

Hi

I have posted before regarding my daughter who has celiac disease.

Although I have had the usual test at the Doctors twice for C.D. they have come back negative but I am now wondering if I am gluten intolerant.

I do eat bread every day and pasta once or twice a week.

My question is if you are gluten intolerant can the symptoms come and go.

I seem to have episodes whereby I do not have any symptoms for a couple of weeks the suddenly I feel as if I have got a tummy bug. I feel bloated, nauseous, go to the toilet a lot more and the motions are loose, I feel fatigued and also feel quite depressed. This can last a few days then I feel back to normal.

Two weeks ago I had the symptom for a few days, last week I did not have them then again today I have them really bad. I also have numb feelings in hands and feet.

This weekend I did eat a lot of pastry as well as the usual bread, and I am now thinking if I get the episodes when I have had an overload of gluten. Can this happen ?

I also periodically get a few blister like spots on my chin and sometimes my fingers which itch quite badly and wonder if this is the type of rash gluten can cause, again this comes and goes.

I also have an underactive thyroid which I take levothyroxine.

Any advice would be gratefully received.

Thank you browny

[Jojo9]

Have you been tested for chrones disease. Only suggesting this as I had same symptoms and got tested for both celiac disease and chrones. I came back positive for celiac disease. Before this I suffered for years with I.B.S. I'm sure you will get answers Ur looking for on here. Jojo.

[Tiggykanga in reply to Jojo9]

Would it make sense to go to your doctor and ask to be referred for a biopsy especially as your daughter has been diagnosed with CD? One has to carry the defective gene/s to even have a predilection towards CD and it seems (in my non medical, inexpert personal opinion) that you might have passed these on to your daughter therefore a possibility you are one of those people whose bloods tests are not a reliable indicator of the presence of CD.

[lucylocks in reply to Tiggykanga]

Hi

Thanks for replying, I had an endoscopy years ago which showed a reflux and this has put me off asking for a biopsy but it is something I think I will have to do, although whether I will get in done with my blood test showing negative. Maybe as you say with my daughter having CD they may agree to it.

[lucylocks in reply to Jojo9]

Hi

No I have not been tested for Crohns but I have looked at the symptoms and I do not have some of them, but I will ask G.P. about it.

Thanks for replying

[LottyA]

Red Apple labs do a Gastro intestinal screen. You need to be referred by a practitioner (not necessarily a GP - a nutritionist or similar will be able to). This tests for antibodies to gluten, dairy and soy and also for pathogens/parasites cell damage etc. it costs £227 and i put it off for ages because of the cost but now i think it was it was the best £227 i ever spent.

[lucylocks in reply to LottyA]

Hi

I had a stool sample arrange through a nutritionist last year which showed I was lacking in one of the friendly bacteria. I have been taking supplements for it.

It also showed some parasites but I have not taken anything for it. I will look at the test you suggest, thank you for the information.

[Jacks in reply to lucylocks]

Did you get to the bottom (sorry!) of the parasitic infestation? They can do a lot of damage. A friend had giardiasis and had villous atrophy (like coeliacs do) but wasn't coeliac. He even developed lactose intolerance! He got quite ill (and lost a lot of weight) before being treated with metronidazole. I think you'd probably know if you had this.

[lucylocks in reply to Jacks]

Hi

The parasite result said Dientamoeba fragilis - Many Trophozoites.

The nutritionist advised some natural treatments but when I research them the feedback was they did not work.

I told the G.P. about the parasites and he said every body has them and they are nothing to worry about, so it got left.

[Jacks in reply to lucylocks]

dientamoebafragilis.com/

No wonder you have so many symptoms - this probably explains everything, don't you think? And why I keep saying it's important not to get too transfixed on everything being about gluten.

Does the GP know about it properly, and know it is causing you so many problems, if he/she does then they are supposed to go to the next line of treatment. It's also very infectious so you could be in a cycle of infestation to yourself and family. Personally I'd ask for a referral. Take your symptom diary.

Did you read this person's blog? It might help when you see someone.

badbugs.org/MyStory.htm

[lucylocks in reply to Jacks]

Hi

Many thanks for the links.

It does sound plausible that the parasites could be causing the symptoms, the only thing is my symptoms come and go, would this happened if it was the parasite causing the symptoms or would the parasites cause the symptoms to be present all the time ?

Also I have not lost weight.

I will have to speak to my Doctor again but what do I do if he says, they are harmless like he did last time.

[virgolizzy]

If you have been tested for Celiacs disease & it's negative, sounds to me as if you may have ncgs - non celiacs gluten sensitivity, which is just as debilitating and sounds as if maybe you are reaching your intolerance level at certain times. I would suggest going back & trying to work with your doctor (but depends on what your doctor is like!) & make sure he looks at other things too, maybe refer you to a gastro consultant, but also, maybe try cutting out all the gluten etc & see what happens, listening to your body is paramount. Have a look at several websites about ncgs, in particular purehealth run by Micki Rose, loads of info on there which may help.

[lucylocks in reply to virgolizzy]

Thank you for replying,

Yes I think I will have to go back to my G.P. but in the meantime I am going to keep a food diary to check if my symptoms are coming when I have had too much gluten.

Thanks for the info. of the websites, I will have a look this evening.

[Jacks]

If your bloods are okay (as most of my family's are) then the CD diagnosis is probably not it. But I'd say yes, it is possible for inflammation to come and go, depending upon what else you eat. There is some interesting information about OXALATE foods being detrimental to the gut, joints, thyroid, even skin. Unfortunately the 'healthiest' foods contain more oxalates. Might be worth looking into. Do a Google search - there is loads to read!

[lucylocks in reply to Jacks]

Thank you for your reply and the info. about Oxalate foods, I have never heard of this before.

I will Google this evening, maybe it is this and not gluten.

[Penel]

Perhaps try keeping a food diary to see if you can pinpoint any trigger foods?

Try googling FODMAPS too, to check out other foods that may cause problems in case it isn't gluten.

[lucylocks in reply to Penel]

Thank you for your reply,

yes I think it is a good idea to keep a diary.

I will google FODMAPS and have a look thank you.

[celisandra]

Hi Browny

It would be worth investigating the rash- that can be the manifestation of an immune response to gluten: dermatitis herpetiformis, info here:

coeliac.org.uk/coeliac-dise...

I hope you find an answer to your problems soon,

Take care Celisandra

[lucylocks in reply to celisandra]

Hi

Many thanks for your reply,

I have had the rash on and off for over 20 years.

One G.P. said it was eczema another acne, but I have never got to the bottom of it really.

Thank you for the link, my rash does look similar to the top picture in the link but in a milder form.

I will point it out again to my G.P.

[Jacks in reply to lucylocks]

Dermatitis Herpetiformis is really, really itchy; burning; sore; blistering absolutely drives you mad (I was diagnosed several years ago). I think the blisters are a real give-away as there is not really any liquid in them. They presented on my back; legs; and knuckles mainly. Had lots of scars from having a good scratch!

[exDancer]

My GP insisted my DH was 'hives' and just prescribed creams (I have a cupboard full and they were useless) it was all very distressing. Then I cut out milk AND soy as well as gluten and gradually the DH faded away - but I am terrified it may return. Unless you've experienced it you cannot believe the violence of the itching - at one point I actually stood in the shower and poured neat bleach all over my torso, the pain was preferable to the itching. I would NOT recommend you try this!

The Caveman diet may help but its horribly boring and makes eating out almost impossible, it does however make sure you aren't eating gluten in small amounts by mistake.

I do hope you soon get some relief.

[lucylocks in reply to exDancer]

Hi

Many thanks for your reply.

My rash does itch and sting but is only on my chin and fingers which come and go. I will need to get it checked out again.