Dozey

I have just been reading some old posts and discovered a thread about anxiety. What a relief! Not that I would wish it on anyone, but anxiety is one of my worst symptoms and I'm pleased to know I'm not alone. The very worst thing for me is the feeling of not being part of the real world. Like I am locked in myself and can't find the key to get out. It makes me fear I am going mad and will never be a normal person again. Could this also be due to gluten?

Thank you

Jo

Looks like you have learned one of the basic rules of Celiac "Read the label!"

Thanks

Jo

Dosey have you spoken with your doctor about the anxiety issue? The doctor could have given you a small script for an antianxiety med to take before your trip for an endo. With someone else driving of course.  Interestingly celiacs who are suffering from depression often either get no relief from antidepressents or are even made worse.  It is not well known by most doctors but it is suggested that when people don't respond to the psychotropic drugs that they be tested for celiac even if they don't have GI symptoms.

 

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"Coeliac disease should be taken into consideration in patients with psychiatric disorders, particularly if they are not responsive to psychopharmacological therapy, because withdrawal of gluten from the diet usually results in disappearance of symptoms"

 

Don't be afraid to ask for short term help with this issue if you need it. Hopefully the anxiety issues will be relieved with the diet so even if your test results are negative do give the diet a good strict try when all the testing you choose to do is finished.

Not with this new doctor I haven't, but with previous doctors. Since suffering severe side effects from anti ds in the past I am very reluctant to take anything in that line now. I was given diazepam for nerves but all that does is knock me out and then I feel worse when I wake up with very bad DP. I seem to react badly to drugs and alcohol which also puts me to sleep, even a very small amount in lemonade!

I know it sounds whimpish but the reactions I have had have really made me frightened of taking anything. I am starting CBT on Thursday in the hopes that it can help with the anxiety and agoraphobia.

Thank for your reply.

Jo

regular rice crispies are not gluten free. I believe it has barley malt in them.

 

Everyone is different, including their reactions.

Thankyou for replying. Just trying to make sense of it all.

Jo

This morning I had Rice Crispies for breakfast with milk, and within about half an hour I was feeling fuzzy, and light headed, my eyesight was blurred and I felt quite nauseous. I thought Rice Crispies were gluten free but admit to not checking the box, but could the effect really come on so soon after eating them? Or could milk cause such a quick reaction too? Or maybe it's something else altogether. Roll on Friday and at least I will know one way or the other. Thanks.

Jo

If the celiac doesn't pan out, you may try going gluten-free anyway and see if it helps, but I would also reconsider your stance on anti-depressants.  I have seen many many people helped by them.  If you have any other chemical imbalance, you wouldn't think twice about remedying it with medicine.  That's what depression is.  Good luck.

Thank you. I don't feel I am suffering from depression as such, and I resist drugs of all kinds. I was on anti ds a few years ago and never again if I can help it. I feel they are not the answer for me long term. I am hoping for some answers on Fiday with the blood results.

Jo

Hi Dozey,

 

How much longer before you get the endoscopy and can go gluten-free?  After you go gluten-free things will probably start improving.  It may take a bit but if you have celiac disease or NCGI, going gluten-free is the key to improved heath.  Gluten can affect any part of our bodies, including the thinker thing.  Malabsorption (malnutrition) can also.  Basically gluten sucks for us.  There, I said it.  Try to get sleep when you can, and take it easy on yourself.  You could try some rhodiola rosea also.  It may help a little.  Avoiding caffiene and sugar may be good too.

 

I hope you feel better soon!

Hi, I am awaiting blood results and don't have an endoscopy planned. I was supposed to have one in November, but the consultant agreed that in my present state of anxiety/ agoraphobia it wouldn't be a good idea. It is an ordeal for me just getting two miles to see the doctor, so twenty three miles to have an endoscopy is out just now. Thank you for replying.

Jo

Sorry you are struggling so much. I think once the tests are done and you can do a gluten free trial that you will see a difference but it may take some time. Hopefully the agoraphobia will be relieved once you are feeling better. If it doesn't get better don't be afraid to seek help for it.  Glad to hear you have support at home as that can make  a world of difference. Having a dog was very helpful for me, along with antianxiety meds (something you hopefully won't need).  We started with short walks and drives and within a few months we were able to walk a couple miles from my home or car without any panic attacks.

Doctors also tried to push me onto antidepressants and it took some time to find one who realized I wasn't depressed I was sick and suffering from anxiety because of the severity of my reactions to gluten.

I hope you are feeling better soon. Hang in there.

Thank you. Some days I don't feel so bad and others terrible. I am doing the same as you did, short walks and rides in the car. My dog is so loyal, she stays with me nearly all the time, and when she goes out with my husband the cat comes and gets on my knee. It's almost as though they know.

Jo

Hi Jo,

 

I am sure you are not suffering from a lack of anti-depressants.  It is natural to feel sad and even really sad when you are having deep troubles.  I agree to avoid the drugs.

 

I hope your test results will be surprisingly definitive, or that the gluten free diet trial will be healing.  I hope that Someone will hold your right hand and be with you through everything.

 

Sorry, you are up at 3 am.  Hopefully, you can sleep late now.

 

Diana

Hi Diana and thank you for your reply. YesI have a lot of support from my husband and son, and even my dog and cat stay close when I need them!

Jo

Hi, just saying hello. Sorry can't help much as I am new to all this too. Apart from headaches I have all those symptoms and am awaiting test results for Celiac and vit D deficiency. The symptoms are also the same as vit B12 def, which I also have. I am sure someone more knowledgable will be along to help soon.

Jo

Hope no one minds me having a ramble, just feel the need to talk to someone. I tell myself a dozen times a day that I'm not dying and not going mad, it just feels like I am. I feel like I'm stuck in neutral and can't get into gear. I'm tired, weak, lethargic, fearful and just feel ill generally. I have DP on and off and my life seems so different to what it used to be I don't know what's normal anymore. Some days it's a struggle to get out of bed even to go to the loo! Other days I can manage a short walk with my husband and dog though I am slightly agoraphobic, probably from being bed bound a few months ( very low b12 and pernicious anaemis). I know if it's Celiac that answer is to go gluten free, but I am still waiting results which I am fairly certain is going to be negative. Sometimes I think I can't take the anxious feelings anymore, they overwhelm me, but I'm not suicidal! I tell myself to be patient and it will all get better, but it is very hard. I'm not suffering from depression but I do get depressed with always feeling ill. I don't want anti depressants which seems the doctors answers to everything these days. I just want my life back. Thank you for listening.

Jo

yep, I am in America.  try posting a question in the gluten free foods, products category with the heading "Gluten Free Shampoo in UK."  sorry I can't be more helpful 

Jo

hi dozey,

 

just thought i'd throw this out there, but when I was searching for gluten free hair products, I ended up buying the Shea Moisture Raw Shea Butter Restorative Shampoo and Condition.  I found it at Target, and it is gluten free which is marked on the bottle.  I've never had sores on my scalp, but it can get dry, and I've definitely noticed this line restores moisture.  There are some starter kits that can be bought from Walgreens to test it out.  here are two links:

 

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Hi there. I take it you are in America. I will take a look at those sites or see if there is anything of the same name available in the UK. They sound nice products. Thank you

 

hope this helps!

There seems to be so much to think about, And I don't even know if I have any sensitivity yet.

Jo

Have you checked your hair care products for wheat?

Hi, no I haven't, never thought about that. I read that gluten can't be absorbed through your skin because the molecules are too large, or something like that. But I suppose it could affect your skin like an allergy. Thank you.

Jo

Thank you Helen. I have been in a bit of a black cloud, but it has lifted since joining. It's a relief to be able to say how I feel without feeling I am burdoning anyone, because you all know how it feels.

Jo

We will Helen. I feel so much better from finding this forum, everyone had been so kind and helpful.

Jo

Yes , Helen, we need to get questions answered don't we? It's knowing which questions to ask. It all seems a bit overwhelming at the moment. Hope you get those tests sorted soon.

Jo

Hi VeggieGal and thank you. It's driving me nuts! I don't drink coffee so that one is out. I am just trying to join all the dots

Jo

Sorry for another question, but does anyone have a problem with sore spots on the scalp? My hair is looking such a mess and I want to put a colour on it but I have sore spots keep coming. As soon as one lots goes another one or two appear. Could this be related to Celiac too? Thank you

Jo

Hi Marco. i can't offer any advise about Celiac as I am new to it myself, but a lot of your symptoms match B12 deficiency. Have you been tested? It is easily overlooked and mis diagnosed. Hope you get some help soon.

Jo

Ah, I can just hear Butters ( South Park ) saying that!    I know how that is Dozey.  It may be you are lacking some essential vitamins and minerals.  When we don't get enough of the right stuff in our diets, or it isn't absorbed due to gut damage, our bodies have problems.  Our brains are not immune to nutrition problems.  Your doctor can do blood tests on your nutrient levels.  If you are low no a couple f them there has to be a reason.  People with celiac tend to have problems absorbing the fat soluble vitamins.

Well I do have b12 deficiency so I suppose there could be others. I am waiting results for vit D def now. I don't know what other things, apart from celiac, were asked for, but the nurse that took the blood said the doctor had ordered a few tests. Have to wait till Friday to find out. I have been so frightened by all the strange things I have been feeling but reading othere peoples experiences have helped that a bit. I think I am still coming to terms with the fact I have some illness or other. I am quite thin now having lost 4 st over the last year and a half and that's a bit frightening too. Thank you for your reply.

Jo

Hi Dozey,

 

Celiac disease and malabsorption can cause lots of different mental symptoms.  This thread talks about some of them.

 

Short temper thread

https://www.celiac.com/forums/topic/34917-anger-quick-temper-depression/

Thanks again, I'll have a look.

Jo

Hi Dozey,

 

Insomnia does seem to happen to quite a few of us.  Another thing that people talk about with muscle tension is magnesium deficiency.  Magnesium helps relax muscles.  /too much will cause D tho.  Might be something to experiment with.

 

Foods don't always give noticeable symptoms right away.  Sometimes effects can build up slowly and get worse over time.  Like weeks, not hours.  Those can be the tricky ones to figure out.  You can't nessacarily find those by stopping them, for a day either.,  It is better to stop suspicious foods for a month at least.at least.  An elimination diet is good tool for finding food reactions.  But it wouldn't be very useful as long as you are still eating gluten.  Maybe after your gluten-free diet start it would be something to consider.  But even then it would be better to  wait 6 months  or so before doing one.  Things can be kind of unsettled for 6 months to a year after starting the gluten-free diet.There are some things like dairy that are known to cause problems for many celiacs though.  It wouldn't hurt your testing to stop dairy now.  Dairy can cause insomnia in some people.

Hi and thanks for your reply. I am finding all this a bit confusing and scary. There is so much to consider, especially as I don't even know if I am celiac yet. I just want ro feel better and be the old me again.

Jo

There are many threads on here about sleep problems, bad dreams, etc. Nope, you are not alone!

You are making sense, hon--to us, anyway.

Thanks again, this is such a supportive site.

Jo