Newbie, Think I Am In The Right Place.

[Bob.H]

Hello and thank you for reading this.

I am a 43 year old male, and i have been looking around this and it's slowly dawning on me that i have a gluten/ wheat problem.

The reason i came here is because i am on my 4th week off work, and feel totally bamboozled about what is going on with me. I'm never off work and never knocked flat like i have been recently, and it's scary, I have always felt bullet proof, until now that is.

I have always craved and eaten wheat and gluten rich foods. However, recently i have been feeling very weak, fatigued and listless, helpless almost. I have been to my GP various times over the past months complaining of this. he has tested my blood for lots of different things, full blood count, liver function, glandular fever, diabetes etc. 3 weeks ago i was on my back, exhausted. I realised something was not right ( i'm a slow learner :-) ) and decided to do something about how i was feeling. I started with acupuncture, my acupuncturist said, try cutting wheat, gluten, sugar and dairy out of you diet. So i did, along with this i started juicing vegetables and eating plenty of greens etc, also Omega 3&6 , minerals. I've even started Yoga and meditation. That might not sound strange to you, but to those who know me i'm a 17st, 46 inch chest lump of a man, but i am loving it.

anyway back to the point Upon cutting these things from my diet, many things started to happen, first thing i noticed was my Asthma disapeared, i have been a lifelong sufferer of asthma. Then my flatulence stopped, i mean i had serious wind all my life!!...my poor wife and kids...lol. and then i know this sounds crazy my eye site got better, i was literally stood looking out of the window and i said to my son, it feels like i can see in high definition. My sparodic diarrhea stopped. My brain fog started to lift, i mean, my memory seemed to be getting worse, i would regularly feel confused and sometimes disorientated, short term memory became laughable. The itching on my head calmed down slightly. so i thought, well maybe there is something in one of these foods that i am allergic to - as i said, i'm a slow learner - . Today i have been in london all day at a doctors that my work sent me to, private healthcare. Next week i am going to see a fatigue specialist at the Kings College Hospital London. By the time i came home tonight i was pretty tired, but not as tired as i have been, which is good, i saw some food on the table, some samosas and falafel ( not home made ) from the supermarket. In my laziness to put in a bit of homework and see if there was wheat or gluten in them i ate some. Within 10 minutes my belly was crazy, the wind came back almost instantly and i immediately started with diarrhea. I mean it was savage. an hr later it has started to calm down a bit, but i think mabe it's clear i have an allergy to wheat and gluten. I have had an endoscopy in the past year, not for suspected celiac disease, but for bleeding. Oneof the symptoms i told the doctor of then was this sudden need to go to the toilet after eating, at no point did anyone mention allergy to wheat or food until the last conslatation with a specialist who gave e my results from the endescopy, no cancer , he said, you have IBS, try cutting out wheat. I ignored him thinking :how can i be allergic to wheat?, I LOVE BREAD!"...and i mean i love bread, my wife has always laughed at how much bread i consume, saying it comes from my working class roots where we moped our food up with bread to make us feel fuller. My doctor took a blood samole to test for Celiac disease 2 weeks ago and we have not heard back from the lab yet?...what does this mean?...also by the time he took blood for the test i had stopped eating wheat for a few days, maybe a week or so.

You guys see to be very knowledgeable about this illness, what do you think?...any thoughts gratefully received. Thank you for your time.

[squirmingitch]

Well, there are enough false negatives on the blood test in the first place. That's why you really want to be eating luten right up until it's done & over with. That gives you the best chance of a correct reading. Secondly, when the blood comes back neg for celiac OR if your doc still suspects celiac b/c the doc is up on the latest & realizes there is a good rate of false neg. on the blood then they may want to do an endoscopy & biopsy to check. There are plenty of neg. blood, positive endoscopic biopsy people on this board. It happens quite often. Now, for the endoscopy you also want to have been consuming the equivalent of 4 slices of bread per day for a min. of 2 months.

So, the endoscopy you HAD did not check for celiac & unless the doc was taking biopsies & looking for celiac then that endoscopy is worthless as far as dx'ing celiac.

When the blood results come back get a paper copy of them from your doc --- the specific tests done & the results. Docs often do not know so they do not do the full celiac panel. People here are good at spotting missing tests as well as interpreting the test results.

I will say that from what you have stated of your symptoms it is highly likely you have a problem with gluten. Either celiac or gluten intolerance.

[GFinDC]

Welcome Bob, glad you found us.

You may have celiac, which is an autoimmune disease or you may have an allergy, or something else.

A couple weeks is not too long for test results from a lab. They send the samples out and then wait for the lab to check them and send a report back. So it can take a while. If you want to have a full, official diagnosis, you can go for the small intestinal endoscopy with 5 or more biopsy samples. I think you are in Britain? They have a prescription plan for gluten-free foods for diagnosed people there. I don't know if those gluten-free foods are worth getting an endoscopy for though. Personally I rarely eat processed gluten-free foods here in the USA so it wouldn't be worthwhile for me. And they don't have that here anyway. Hmm, rambling mode in effect.

So, the standard advice is to keep eating gluten until all testing is completed. That gives the best chance for somewhat accurate results. In the meantime though, there are some changes you could make that might help your digestive system without eliminating gluten. Start by not eating any dairy and sugar. Celiac damages the villi lining the small intestine and that is where the enzyme to digest dairy sugar (lactose) is produced. So dairy is often a problem. Sugars feed bacteria which can cause an overgrowth of bad bacteria when they are not properly digested (due to a damaged gut). So avoiding sugars may help with bloating. Also taking probiotics will help keep the good / beneficial bacteria going. Cutting down alcohol and eliminating soy may help too. Sticking with a whole foods diet and avoiding processed foods is very helpful too. This may require more cooking.

Feeling weak and fatigued is a common symptom. That feeling can be caused by malabsorbtion of nutrients. Malabsorbtion can cause lots of symptoms. It's kind of like starving while eating all you want.

Here are some threads to help you get started:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

[benXX]

... Now, for the endoscopy you also want to have been consuming the equivalent of 4 slices of bread per day for a min. of 2 months...

That's about 10g of gluten per day.

They had me on a gluten challenge of 30g per day for 2 months

[Bob.H]

Thank you for the replies. I think at the moment regardless of the report results from the bloods i am staying gluten and wheat free. If they come back negative that's fine. knowing just how it affects e and how i feel is enough to keep me off it. I have already ditched sugar and dairy and i am fine with that too.

Now when you say sugar, does that mean fruit, dates?. Are they considered sugar. Sorry if that is a proper noob question. thank you.

[squirmingitch]

No Bob; stay off sugar does not mean stay off fruit & dates necessarily. But you may find that you need to eat some fat with those fruits in order to properly digest them. Example: Have an apple but eat a handful of cashews with it. You need some fat with your carbs --- get it? However, you may find that the sugars in fruits are too much for you right off the bat. And then you would need to cut them out for a while. Every person is different. We can't make blanket statements that apply to each & every one of us. Unfortunately. It would be so much easier if that were so. You're going to have to do some trial & error to find your levels. As GFinDC stated many of us can not tolerate soy. I am one of those. It might be easier if you eliminated soy right from the beginning & then when you get some healing under your belt you can try soy & see what reaction you have if any. The simpler you eat now; the easier it will be to identify what bothers you & what doesn't as you begin to add foods back into your diet. You will add one item per week.

And Bob, do yourself a favor & forget the processed gluten-free foods for at least the first 3 months. For 3 months just whole foods ---- meats & fresh or frozen fruits & veggies --- make sure frozen ones are plain ie: no sauces & such as they can contain gluten.

Keep reading posts here & asking questions. There is a steep learning curve to this.

Wow bennl1! 30g per day for 2 months! Just goes to show how different docs have different thresholds. I've heard of it being 3 months too. So go figure.

[Bob.H]

Thank you very much..all very useful information. I am doing 90 days of raw greens, raw juices, fruit and some meats. Keeping off ALL processed gluten free.