Some Advice Please

[itsgareth]

Hiya,

I have been gluten-free ( or so I think ) for about three months now. I follow a very strict diet. About a month in I was feeling much better but now not so great. I'm still getting pins and needles, severe twitches, bad skin and sometimes fatigue. Not to mention the uncomfortable stomach from time to time. Also I become paranoid over the most stupid things, basically I feel like I'm no longer in control of my own mind. My speech is becoming impaired and my face swells.

I did used to eat porridge every morning but have now stopped the past few days as I felt this may have been the root cause, yet no improvement. I'm sick of this now, not only does this intolerance change my appearance but also my state of mind.

Please help. I'm reluctant to go back to the Doctor as she mis-diagnosed me as having IBS for two years, and now it seems I'm paying for it.

Gareth

[missy'smom]

Hi, and welcome.

What kind of porrige are you eating? What kind of grain is it from?

There is a skin condition associated with Celiac called Dermititis Herpetiformus.

Gluten can really affect the mind. I and others in my family and many other here can attest to that.

Fatigue is very common and can take time to overcome depending on what's causing it, vitamin deficiencies, damage to other organs of the body causing them to not regulate the body properly. Strict adherance to a gluten-free diet and time can heal alot but sometimes we need the assistance of doctors, further testing and medication.

I haven't had some of the symptoms you have but I did struggle with fatigue for a good six-8 months and then it got much better but I still have to eat regular meals and get a good night's sleep and take a good multi-vitamin. I do ocasionally have a hard time spitting out words, initially it was if I got glutened but now sometimes it happens when I'm fatigued.

My sister has had seizures involving twitching. They're not the kind of seizures where you become unconscoius We haven't gotten to the bottom of what causes them but they used to occur when she was especially fatigued. She has been on anti-seizure meds and they weren't working anymore even at the highest possible dose but now that she's gluten-free and her intestines are healing and absorbing the medication she is not having problems anymore. Eventually she hopes to be off the meds entirely. Any way, I'm offering up some sort of sieizure as a possible explanation for the twitches. Maybe others will have other ideas. Blood sugar problems? Sorry, I'm not a doc. Hope this helps.

[missy'smom]

I'll add too that if finding a new doc-one that is familiar with Celiac- seems overwhelming can you ask a friend or family member to research it for you? I recently did this for my sister as she was not up to the challenge both emotionally and otherwise. I live in another state and I went on the internet and found and contacted a support group in her area and they gave her the name of a Doc.

[VioletBlue]

Do you suffer from anemia? Have you had recent blood tests to determine vitamin and mineral levels? I don't know your history, or how bad it's been for you, but Celiac can deplete crucial vitamin and mineral stores. The pins and needles, the twitches, the skin, the fatigue, even the paranoia could be a matter of vitamin deficiencies caused by the Celiacs. Once diagnosed, from what I've read from other people here, it can take months or even years to get those levels back up to where they should be. I'm currently taking about five times the recommended daily dosage of an iron complex and it's just beginning to make a dent after seven months.

Violet

[jewi0008]

I think this is a good place to discuss what you eat in a day? I know for me, I always say I'm "gluten/wheat free," but then I'll have a reaction of some sort and I'll wonder why. I'll tell someone what I ate and they will say, "Well that's because XX has gluten in it." I had no idea. What is a typical day of food like for everyone?

[itsgareth]

Well a typical day would go as follows:

BREAKFAST:

1 Orange

1 Pint of Water

LUNCH:

Egg Fried Rice (It specifically says Gluten free on the packet)

1 Packet of Walkers Ready Salted Crisps (Potato Chips in the US )

1 Bag of Grapes

1 Yoghurt

1 Probiotic Drink

1 Gluten Free Naan Bread

Water

DINNER:

Steak

Potatoes

Carrots

Peas

Coca Cola

Like I say I was eating Porridge before and I have since given that up, thinking of giving up Dairy too if that will help. Ideally I need to go see my Doctor by I have completely lost faith in her since this is not the first time she has misdiagnosed me with something.

[missy'smom]

It sounds like you need to find a new Dr.

I would check the chips and yogurt to see if they are gluten-free. Here in the states there are some kinds of flavored yogurts that are not gluten-free. I don't eat chips but the are some mainstream brands that folks here have problems with due to cross-contamination in the manufacturing plants I believe.

[jewi0008]

  missy said:

It sounds like you need to find a new Dr.

I would check the chips and yogurt to see if they are gluten-free. Here in the states there are some kinds of flavored yogurts that are not gluten-free. I don't eat chips but the are some mainstream brands that folks here have problems with due to cross-contamination in the manufacturing plants I believe.

It's interesting, too, because I will a lot of times have problems with "artificial" wheat & gluten free products. For whatever reason, anything that isn't "natural" doesn't agree with me. Also, the egg and fried rice might not be good? I'm having severe eye twitching today. But, I also had a ton of gluten foods the past couple of days. I will pay for it.