Gluten Intolerance

[Rachel]

Hi everyone,

I am starting to suspect that I have an intolerance to gluten. I've done some reading and it looks like a possibility, so I've cut out gluten and have been gluten free for almost 2 days.

How soon should I notice an improvement in symptoms due to an intolerance, if indeed I have one?

Rachel

[pastordari]

I have a dear friend who is gluten intolerant.

She suggests being gluten free for a month.

Her son is going through the process right now.

She says you have to be very diligent about NO wheat, not even a smidggen - like letting bread touch your salad or something.

Otherwise you won't really know if the culprit is gluten or something else.

Given this, I'd say a ouple of weeks or so.

I talk to her every monday and will try to remember to ask her this question for you.

She has done much reading and research (sounds like you have as well) as she and one of her sons are gluten intolerant. The younger son is now thinking he might be as well. Strongly hereditary, I guess.

Good luck!

Dari

[flop]

Rachel, are you suspecting that you have coeliac disease? If so it is important to know that in order to be tested you have to be eating gluten for several weeks prior to the testing so it might be worth asking your PCP to do at least the blood-tests before adventuring any further into gluten free diets.

The testing can be done by several different blood tests or by having a duodenal biopsy taken during an OGD (upper endoscopy). If you are on a gluten free diet the test results will come back negative, even if you do have coeliac disease. I have read on here of people with negative bloods but positive biopsy, and people with positive bloods but negative biopsy so I guess the ideal test is to have both blood and biopsy but the blood test is much simpler and cheaper to have done.

Flop

[Rachel]

I don't know if I have celiac disease or just gluten intolerance (or neither!), but it seems like a possibility. I don't have an appointment scheduled with my pcp for another month and a half, so I thought I'd just try gluten free meanwhile and see if it helps at all. My pcp is an hour away. It's quite a trip to make, especially if I don't end up having gluten intolerance.

Do you have to be eating gluten to have the blood tests? I know you do for the biopsy, but I thought the blood tests were a little different. I had hoped that I could go gluten free for a week or so, and then if I notice improvements call my doctor and go have the blood work done. But if it takes a month of gluten free to notice improvement, then that won't work. And if being gluten free for a week could mess up the results of the blood work then that's not good either.

Oh, I get tired of trying one thing after another. But I guess there aren't any shortcuts, huh? I guess I'll be calling my doctor on Monday.

[flop]

Hi Rachel,

sorry you do have to be eating gluten for the blood tests as well as the biopsy. The bloods measure levels of anti-bodies in the blood that are produced in responce to eating gluten.

Can you talk to your PCP / nurse at the office on the phone to help decide about having testing? If you're going to have the tests, I'd go back on gluten now. Otherwise if you find that the gluten free diet does help, going back on gluten just for testing will be a huge challenge. (In the UK it is important to be diagnosed as officially having coeliac disease as you then qualify to get gluten free bread, flour, pasta etc on prescription - and I think it is free or much much cheaper than buying gluten free from the health food store).

I hope you get some answers and relief from your symptoms soon,

Flop

[MightyMouse]

I second flop--you need to be exposed to gluten in order for the blood and biopsies to be accurate. I wasn't able to tolerate eating the gluten again for long enough to show up on tests--I barely made it a week to 10 days, and my doc insisted that 14 days was the minimum and he wanted me to go for at least a month. Blech!!!!

When I eat gluten now, I'm sick within an hour or two with pain, cramping, abdominal bloating, and then my entire gi system gets upset--and it can either mean i go bm rather soon, or get really constipated. Either way, it's no fun and I rarely cheat anymore.

Nina

[Rachel]

Because I haven't eaten gluten for two days, do I now need to wait 14 days before I have the blood work done?

Rachel

[MightyMouse]

probably not, b/c you haven't cleared your system long enough for your body to be "gluten free". With celiac/coeliac, it takes quite some time for the gut to "heal" and not be inflamed.

Nina

[flop]

I think if you go back to a normal right away the 2 days off gluten shouldn't make much difference. As Nina said your gut won't heal in 2 days and after all it must be possible to "accidentally" not have gluten for 2 days anyway if you just had things like salad, chicken and rice.

I hope your PCPs office can schedule some testing for you in the near future, then you can try going gluten free safe in the knowledge that if it does help you you won't have to face going back on to gluten (which I belive often gives symptoms much worse that the originally if you really do have coeliac disease).

Flop

[Rachel]

Thanks Flop and Nina. I'll see what I can do about getting a blood test scheduled soon.

Rachel

[DancingLight]

Rachel,

I am on a gluten free dairy free diet and it has been life-changing.

I never tested positive for Celiac disease...but honestly, I don't think that necessarily means much. I think many, many people have food intolerances and it's worth a shot to go gluten free (and even dairy free as my ANS doc believes up to 30% of POTS patients are allergic to dairy--but don't test 'allergic').

I never wanted to go back to gluten just to confirm for sure whether or not I had Celiac. But early tests showed I didn't. It wasn't worth the colonoscopy either! It works for me, so I'm sticking with it and my doctors agree.

Also, there is a newer more specific genetic test available for Celiac disease that DOES NOT require you to be off of gluten.

I will be interested to see if in a month or so you notice any changes. What made you suspect gluten intolerance?

Best,

Emily

[Sophia3]

Emily

Do you FEEL BETTER GLUTEN FREE? If so, how?

I tried it a couple years ago even though blood work was negative. It did NOTHING for my fatigue or INTERMITTENT gut issues, gas and bloating. NEver constipation or diarrhea.

ALso it messed up my blood sugar more since GF is HIGH on the gylcemic index with most foods.

After almost 3 months of STRICT ADHERENCE, I noticed no DIFF and finally tied it into hormone changes. At one point I thought things were better for 10 days then hormones and bang, GI junk again.

As women age in 40's and 50's very many develop IBS or MILD IBS symptoms...so that be me.

Not GLUTEN FREE and saving on the food budget. But more power to folks who FEEL BETTER ON IT. I know it can be LIFE CHANGING to many energy wise and they can FINALLY GAIN WEIGHT when they eat GF diets.

Just wondered what difference you noticed, Em. It did not help my brain fog either.

[DancingLight]

Sophia,

I have a return of all of my GI distress--bloating, diarrhea, feeling 'toxic', lower energy (not that I have energy to begin with), constipation, etc.

When I went gluten and dairy free on a fluke (b/c no doctor was helping me at the time, I tried the elimination diet), my GI symptoms that I had shrugged off as IBS (lots of diarrhea and nausea, etc) pretty much disappeared.

When I 'cheat', which I no longer do b/c it is NOT worth it, I feel sick, toxic, bloated, constipated, have stomach pain, diarrhea, etc. I know saying 'toxic' sounds a bit out there, but I don't know how else to describe it. My body just feels less 'heavy' and I feel better. Not to mention the disappearance of bothersome GI symptoms.

I don't 'cheat' at all anymore, it's just not worth it!

I just started being able to eat soy, not sure why I can tolerate that now and couldnt' before. But, even now if I eat eggs I am in so much pain--stomach pain, diarrhea, etc. etc. so I just don't do it.

Interesting note about menopause and gluten. Our neighbor was having a lof of problems with menopause and she read somewhere that going gluten free could be helpful. She did it and she feels FANTASTIC! And she looks great--has lost weight and feels really good and it is helping her so much.

Emily

[Rachel]

Emily,

For years I've known that I feel better when I eat primarily fruits and vegetables, but whenever I mentioned dietary stuff in connection with my POTS doctors haven't said anything. One doctor told me, "Well that's not my speciality. Eat the food pyramid." But the problem is that not all of those foods in the pyramid work for me! Anyway, I've read a little bit about gluten intolerance in the past, but the symptoms didn't quite fit. I stumbled across some more info just recently, though, and found that some lesser known symptoms can still indicate gluten intolerance (ex. I very rarely have bloating and diarrhea, the hallmark symptoms, but I recently learned that those don't always go along with gluten intolerance). So I've started wondering if it's not the fruits and vegetables that make me feel better; it is that eating lots of fruits and vegetables means that I eat less gluten, and less gluten makes me feel better.

In a few weeks I'll have my blood checked and we'll see what we find. It is kind of strange that no doctor has ever checked me for food intolerances, even though I've said that I don't tolerate some foods well. Even if the bloodwork comes back normal I'll try gluten free for a while and see what happens. I'm pretty much off of dairy, although that doesn't make a huge difference for me. Milk makes my heart pound and makes me tired for about 2 hours. There don't seem to be any long term effects, though.

Rachel

[DancingLight]

Rachel,

I have found that it is so very difficult to find doctors to pay attention to the food intolerance issues.

I did a total elimination diet and then gradually added some things in.

Follow your gut (literally and figuratively!) on this one...

My docs now 'get it'...and I am really lucky, but it was still something I figured out primarily on my own.

Keep us posted!

Emily

[cordila]

I agree with Emily that avoiding gluten is a life changer as far as GI stress/distress is concerned. I also found that avoiding dairy and fruit is helpful. Less than 10 cherries or a bite of pineapple has sent me to the ER with doubling-over abdominal pains.

Also on the list of avoiding: alcohol and caffeine.

I have a sense that avoiding sugar would be a good thing but I find that to be a challenge. It just tastes so good...

[Mrs. Burschman]

Welcome, Waterbaby! Nice to "see" you here!

We're always happy to have new members, though we wish you didn't have the medical problems that brought you here!

Amy

[cordila]

Thanks, Amy. I got diagnosed in Aug 2006 after having dysautonomia problems since birth. It took them over 30 years (!!!!) to discover what I had. I'm so thrilled to have found you (DINET). I've read and reread all the postings and they have helped me significantly, both emotionally and physically. So now that I've been on the road for over a year I hope I'll have some things to contribute that might help someone, somewhere feel better. Thanks for the welcome!

[persephone]

Hi Rachel,

Who cares about a blood test? If gluten isn't agreeing with you, cut it out right away and see if you notice a difference. I tested negative on the biopsy for coeliac but avoiding gluten made me much better. I used to bloat and bleed if I came into contact with wheat or gluten, so even tho I wasn't full blown coeliac, I used to avoid the culprits anyhow.

I also noticed quite an improvement in my headaches after doing it.

THere are some delicious wheat and gluten free alternative foods.

It is also known that a gluten free diet can help some people with MS to feel better.

[ajw4790]

I asked my dr. about getting allergy tested and seeing about gluten, because I had seen that it can be linked to some of my symptoms. She said because I was lacking some of the GI symptoms it couldn't be the case and wouldn't entertain the thought. I have had gastro. issues etc. just not what she specifically asked me. I wish that there was more info out there on this... It seems so wishy-washy!

Good luck with it!

[MrsMum]

Hi MrsMum here

Sorry I don't post very often, but as I'm still struggling with a diagnosis wasn't sure if I am welcome, but thought I'd post on this thread as it seem relevant to me.

I stopped eating diary products about 3 or 4 weeks ago, and some things seem to have improved - I don't snore as much, I am not so grouchy, and I don't have so much pain in my belly. I ought to have done this ages ago as I had problems with diary as a child but thought that being pregnant 3 times had cured it.

Following this, I also tried cutting back on gluten (not completely being fanatical without a coeliac test). The thing I noticed first was my extremely bloated abdomen felt less bloated - and people noticed that my tummy was "going down". I also stopped feeling like I was severely constipated, and the fleeing of a "blockage" in the bowel disappeared, too.

Having read that you need a normal diet for at least 6 weeks before any investigations, I re-started the gluten foods, and guewss what? My tummy swelled again, and the pains in the balls of my hands, feet (and even the pains in my buttocks) all came back. Sadly, as you will all understand, having been through so many "false starts" over the last few years, I couldn't be 100% sure that it really is the gluten and not a co-incidental "good" phase.

Bearing this in mind I did 2 things:

1: did a home blood test

2: approached my GP for referral.

The outcomes were

1: the blood test was negative - but I have had antiphospholipid anticardiolipin tests come back negative on 3 occasions, before finally getting 2 positives and a diagnosis. This makes me wonder, especially when you read that it is quite possible to negative blood and positive biopsy or vice versa.

2: my GP is adamant that the only reliable test for coeliac disease is to stop eating gluten and see what happens. I KNOW I need the biopsy, but I also know that she is not going to refer me a s I have had a barrage of tests over the last 5 years, and they have all come back negative (so how come I feel so crap?)

I am re-trying cutting out gluten, and will then try to find someone who will take me seriously - if I am right I should be referred to a nutrition specialist, and would also be entitled to have some of the more expensive coeliac foods on prescription.

But the main reason for wanting a diagnosis, is to prove to everyone who doubts how ill I feel that it's not all in my head znd at least some of the symptoms have a "real" origin. I'm sure you all understand that feeling!

Sorry for going on so long.

Best wishes

MrsMum

[MrsMum]

MrsMum again

What I did forget to mention was that since changing my diet, I no longer feel have beads of clammy sweat all over my face and body, and no longer fell hot all the time - in fact I have actually voluntarily turned on the heating (I usually battle with my husband who says it is cold when I feel hot) and worn a coat for the first time in 6 years (and that includes 6 winters!)

I can't help wondering if the two things are connected? Anyone else experienced the same things, please?

MrsMum

[MrsMum]

Hi - MrsMum here again.

At last I "have something" - http://dinet.ipbhost.com/style_emoticons/d...lt/rolleyes.gif

http://dinet.ipbhost.com/style_emoticons/d...lt/rolleyes.gif yipee.

I saw the ENT guy today and my barium swallow showed oesophogeal dysmotility and oesophogel reflux - and guess what, it seems that this is connected with coeliac disease and dysautonomia. http://dinet.ipbhost.com/style_emoticons/default/ohmy.gif

http://dinet.ipbhost.com/style_emoticons/default/ohmy.gif

Having mentioned to him that I need regular Movicol for my bowels, he is referring me on to Gastro-entrology (or however you spell it).

I know you know the feeling - finally something has been proven, and I feel better for knowing it isn't all imaginery. Perhaps there is light at the end of this tunnel?

Regards, MrsMum

[Tanzanite]

I had a positive home blood test for coeliac recently and a food intolerance test came back with gliadin (gluten), cows milk, rice and corn. I have so many symptoms of coeliac disease and numerous auto-immune diseases coming out, probably as a result of it.

I react to gluten within an hour and a half and I feel dreadful for 2 weeks after. I don't eat a lot of gluten anyway when I did the test so I upped my intake a little and I couldn't do more than 3 days as I was so ill as a result.

I recommended a book called Dangerous Grains and Celiac Disease, a hidden epidemic. They really opened my eyes!

[desiree942]

Dr. Grubb told me that any of the gastrointestinal autoimmune discorders such as celiac/gluten intolerance are a principal trigger for POTS in some people. He believe this was definitley the case in my abrupt onset of POTS. I did not have all the classic gastro symptoms associated with celiac and I am blood/gene negative but biopsy positive. Once I went gluten free most of my gastro symptoms improved and my autonomic dysfunction/orthostatic intolerance got much worse. He said that's typical with the autoimmune stuff. Now cymbalta the cymbalta he put me on is helping me a lot!