Help Pls!

[marni]

For several years now I've not felt great.. The gastro problems aren't massive.. Bit of toilet trouble, bloating, gas, feeling quesy etc. But my main prob is fatigue, foggy head, feeling low (not constant), achy, just a lesser version of my old self. After several blood tests they found anemia, abnormal thyroid and positive for celiac. Straight after the biopsy i went gluten free for 6 weeks but didnt feel any better (was this not long enough?). Then biopsy came back negative doc told me i may have latent celiac and to carry on eating gluten as the diet is a pain and wait till I'm really sick - loosing weight/savage toilet trouble etc. I was a bit annoyed with their response at first.. Just signed me off cause apparently I'm not sick enough!! Anyway I did start eating gluten again.. Now some months later I still feel the same and can't help wondering if I should have gone gluten free for longer? I've moved now and doc here has asked for bloods again. Thyroid and anemia came back normal but still waiting for celiac result. Can anyone advise.. Are these normal symptoms of celiac disease or sensitivity? Esp if they can't find gut damage.. Surely I should be getting all my nutrients and therefore why the problems if this was down to gluten.. I'm confused pls help!

[atan91]

For several years now I've not felt great.. The gastro problems aren't massive.. Bit of toilet trouble, bloating, gas, feeling quesy etc. But my main prob is fatigue, foggy head, feeling low (not constant), achy, just a lesser version of my old self. After several blood tests they found anemia, abnormal thyroid and positive for celiac. Straight after the biopsy i went gluten free for 6 weeks but didnt feel any better (was this not long enough?). Then biopsy came back negative doc told me i may have latent celiac and to carry on eating gluten as the diet is a pain and wait till I'm really sick - loosing weight/savage toilet trouble etc. I was a bit annoyed with their response at first.. Just signed me off cause apparently I'm not sick enough!! Anyway I did start eating gluten again.. Now some months later I still feel the same and can't help wondering if I should have gone gluten free for longer? I've moved now and doc here has asked for bloods again. Thyroid and anemia came back normal but still waiting for celiac result. Can anyone advise.. Are these normal symptoms of celiac disease or sensitivity? Esp if they can't find gut damage.. Surely I should be getting all my nutrients and therefore why the problems if this was down to gluten.. I'm confused pls help!

Your doctor told you to keep eating gluten because the "diet is a pain"? I'm sorry but that is ridiculous. You should not be eating gluten. It can also take a year or more to start feeling exceptionally better on a gluten-free/DF diet.

[marni]

Well it was the gastroenterologist actually!! She said my intestines look fine and that the diet is a real pain and I should come back when I'm really sick with awful diarrhoea and weight loss.. Until then keep eating gluten!! I was pretty annoyed!

It's now been four years in total that I haven't felt right.. Another doc thought I might be depressed.. Had head ct scan as migraines were so bad at the beginning.. they put me on amitrypiline (sp!) which made me feel like a zombie but did stop the pain.. Now I have days where I don't feel too bad and days when I do..

So the opinion here seems to be go gluten-free for good right?

[Roda]

For several years now I've not felt great.. The gastro problems aren't massive.. Bit of toilet trouble, bloating, gas, feeling quesy etc. But my main prob is fatigue, foggy head, feeling low (not constant), achy, just a lesser version of my old self. After several blood tests they found anemia, abnormal thyroid and positive for celiac. Straight after the biopsy i went gluten free for 6 weeks but didnt feel any better (was this not long enough?). Then biopsy came back negative doc told me i may have latent celiac and to carry on eating gluten as the diet is a pain and wait till I'm really sick - loosing weight/savage toilet trouble etc. I was a bit annoyed with their response at first.. Just signed me off cause apparently I'm not sick enough!! Anyway I did start eating gluten again.. Now some months later I still feel the same and can't help wondering if I should have gone gluten free for longer? I've moved now and doc here has asked for bloods again. Thyroid and anemia came back normal but still waiting for celiac result. Can anyone advise.. Are these normal symptoms of celiac disease or sensitivity? Esp if they can't find gut damage.. Surely I should be getting all my nutrients and therefore why the problems if this was down to gluten.. I'm confused pls help!

What your doctor recommended to you is so unprofessional. Given your positive blood work and him suggesting that you have latent celiac(celiac disease that hasn't caused villous atrophy) disease, I can't believe he told you that. Six weeks, in the grand scheme of things is not very long. It can take months to start feeling better and sometimes up to a year to feel back right. You very well may have not had any damage in the intestine or you got a false negative biopsy. It has around a 20-30% false negative rate. It can be caused by several things: not enough samples taken(8-11 is recommended), inexperience pathologist intepreting the biopsy, and patchy damage with the damaged areas not being sampled(damage is not visible with the naked eye). During your time gluten free you still may have been getting cross contamination or making mistakes. It happens frequently in the beginning while you are still learning the ropes. You also could have other intolerences too. Dairy and soy seem to be problems for some. Dairy can be hard to digest if the villi are damaged. They produce the enzyme necessary to digest the sugars in milk.

Alright, since you are back to eating gluten, how long have you been back on it? If you are testing again, since you were gluten free for 6 weeks(it can give you false negative on tests), it is recommended to eat gluten for at least 3 months while eating 3-4 slices of bread or equivilent/day. Essentially what you have done is a gluten challenge. I would request copies of all of your previous testing. Sometimes doctors don't always tell us everything. I personally wouldn't get anymore tests done and spend the money on them. I think you should consider yourself diagnosed and go strictly gluten free. Here are some things that I think everyone diagnosed should do in the beginning to help out:

-replace or buy a separate toaster, pasta strainer, wooden spoons, cutting boards, wafle iron/griddle, worn or scratched cookware/bakeware/plastic storage containers

-replace or buy separate condiments(you could share the new as long as noone else contaminates them by double dipping in the containers with spoons/knives that have touched gluten items), herbs/spices, baking ingredients that culd have potential cross contamination (measure flour then use the same cup to measure sugar without washing etc)

-rid the house of baking with regular flour. Flour dust can stay airborn for appx. 24 hrs then settle back down on counters.

-if going to have a shared kitchen/house have separate area for gluten free and gluten. My husband is not gluten free and has his toaster on a small separate area of the counter just for him and has a drawer in the fridge and a shelf in the pantry just for him. Also I recommend a separate dish rag/sponge for handwashing gluten and gluten free items. I do put both in the dishwasher however together without problems.

-make sure your personal care items are gluten free especially toothpaste, mouthwash, lotion, lipstick/lip balm, make up, shampoo, hand soap, etc.

-some people put their pets on gluten free food to avoid cross contamination from their food and slobber/kisses

It seems like a lot and overwhelming at first. I may have forgotten to mention something, but I'm sure others will chime in. So welcome and I hope you start to feel better soon.

[mushroom]

Well it was the gastroenterologist actually!! She said my intestines look fine and that the diet is a real pain and I should come back when I'm really sick with awful diarrhoea and weight loss.. Until then keep eating gluten!! I was pretty annoyed!

It's now been four years in total that I haven't felt right.. Another doc thought I might be depressed.. Had head ct scan as migraines were so bad at the beginning.. they put me on amitrypiline (sp!) which made me feel like a zombie but did stop the pain.. Now I have days where I don't feel too bad and days when I do..

So the opinion here seems to be go gluten-free for good right?

Why on earth would you want to make yourself really sick just because an ignorant doctor suggests you do that, when you could be well by not doing what she says? Doesn't make any sense to me Get rid of the meds, the migraines, the zombies and start feeling better for goodness sake

[Bubba's Mom]

If you were DXed as Celiac..you shouldn't eat gluten! A Dr. telling you that it was ok because you don't have severe damage to your intestines is madness.

Consuming gluten will cause you harm and open the door to other auto-immune diseases.

[Skylark]

That's like saying "You have just a little cancer but you should wait until it's really severe because chemotherapy is so uncomfortable."

[Di2011]

Anyway I did start eating gluten again.. Now some months later I still feel the same and can't help wondering if I should have gone gluten free for longer?!

I've been off gluten (with a lot of mistakes especially early) since June this year. I still make mistakes (drank from son's water bottle by mistake yesterday while out - he'd been eating grain biscuits) and itched all afternoon, numb lips & this morning I woke at some ungodly dark hour and spent hours itching. I am diligent when it comes to eating etc but even after all these months the drinking still gets me!!

Despite yesterdays hiccup...

I feel the best I ever have.

I wake up in the morning and want to get out of bed. (This is my FAVOURITE! I have NEVER ever felt this)

I've lost weight with minimal exercise (exercise is on my to-do lis -, I walk, kick the ball around with son etc which I haven't done with him for years, but feel like I could step it up now) I got to nearly 100kg two years ago and now at about 70kg, not too far from my ideal

I (sometimes, have a way to go with this one..) like to eat. My taste buds seem to have become more alert or sensitive or something.. can't quite describe it.

I'm not constipated and bloated all day/night

My skin is getting soft to touch. (My skin was sooo dry, peeling off and itching like crazy. Always thought I didn't drink enough water which i know now was ridiculous. Baby oil has been my best friend the past couple of weeks)

My son and others have my attention (I was so often caught in the middle of conversations that I had no idea what was being talked about and always somehow "vague")

These things only really started to become apparent to me in the past 2-3 weeks. So that makes it about 4-5months (June/July/Aug/Sep/Oct). It has been like 3 steps forward, 2 steps back (five steps total) every day. But that 1 step forward makes the other four worth the effort.

[marni]

Thanks so much everyone for taking the time to reply to me, it really is appreciated! I guess deep down youre all confirming what I thought was probably right..! As I said before my doc here has taken another set of blood to test for celiac.. I should know the outcome by the end of the week.. I'll keep you posted! x