Nothing Seems To Work

[1dayatatime]

I was recently diagnosed with Celiac Sprue but have had awful "d" for nearly two months. I have read several web sites about Celiac and bought a book with places to shop and what to buy. I have been on a gluten free diet for about three weeks and still no change. I have read on here that many of you have also stopped eating dairy products. I drink lactose free milk, don't have butter or margerine, stopped having ice cream and cheese. How long does it take to be gluten free? I am losing weight and my mouth is very dry all the time. My G.I. doctor gave me a little pamphlet with foods to avoid and said to take vitamins. He also gave me prescriptions for generic Lomotil and Bentyl which I take at least three times a day. I have emailed and phoned the local Celiac support group and I get no reply. This forum is quite helpful so I thought I would ask what else I could do to stop this "d". I don't think any of the food I eat is nourishing me at all. My husband has Crohn's Disease, in remission. All my kids are grown and out of the house so I only cook for two. I am waiting to see the Nutritionist who will be coming to work at my G.I. doctor's office in July. Thank you for any recommendations you may have.

[RiceGuy]

Well, lactose isn't the only offender in milk, so I'd recommend avoiding that, at least for awhile. Also, if you can post a list of the things you typically eat, I'm sure you'll get plenty of helpful recommendations.

The D does continue for awhile for some people, so you may just have to give it a little more time. It seems to body does that sometimes, perhaps to flush itself out I suppose. Obviously, there's only so long that it should continue before it would be an indicator of some other issue. Plus, there will be nutrient losses from it, so you are right in thinking that your body isn't getting nourished properly.

Taking some supplements is definitely a good idea. Calcium can reduce D, but just making the D go away really isn't eh answer. What you truly need to do is find out why it is still happening. Again, my first suspect is the milk, as lactose-free cow's milk will still have casein for example, which is often a problem. Some other nutrients you may need to supplement are potassium, vitamin D, vitamin B12, B-complex, and zinc. Fatty acids might also be a good idea. Many do find a magnesium supplement very helpful too, but since magnesium has a tendency to loosen stool when taken in large doses, you may be more comfortable without that, at least for now.

To replace cow's milk, try almond milk, cashew milk, rice milk, etc. Although soy milk is common, it doesn't agree with everyone, so I'd suggest staying away from top allergens until you feel better.

Among the top allergens, are corn, soy, meat, wheat (obviously), nuts, peanuts, and nightshades.

So glad you found this site, and welcome to the board! I hope you feel better soon!

[AliB]

I have now been gluten-free for four months and it has taken all of that time for things to start to settle down. I realised recently that I have been getting low-level glutened all through from foods I thought were safe, like oats.

It is so insidiously deceptive and it is so easy to be getting it without realising as it lurks in so many other forms.

I dropped dairy at the same time as gluten although I do have a little butter. I changed to gluten-free carb foods, but realised pretty quickly that I needed to avoid those as much as possible - I have never coped with carbs very well and gluten-free carb foods are generally high both in carbs and sugar.

I have realised that I am an extreme fast oxidiser 'protein' type so I try to ensure that I get plenty of good protein to help rebuild my body. I adopted the Specific Carbohydrate Diet that limits foods to plain, unprocessed meat, fish, poultry, fresh veg and fruit. It took a good 2 months for my digestion to properly settle down, but apart from when and if I have any dairy, which gives me the C, it is a lot better.

We get somewhat impatient to see results but have to remember that the damage didn't happen overnight, and is unlikely to recover overnight. My horrendous stomach pain resolved pretty quickly and the D stopped within a few days, but I think that may be because I had caught it before the damage had got too great - the first 'floaty-stool' indication led me to Celiac and after having the blood tests done I dropped gluten straight away.

I daresay that if the damage had gone on for longer it may well have taken longer for the D to resolve itself. When the gut is badly damaged it can't work properly. At least you now can start to help your body recover, and 'time is a great healer', as they say.

Three weeks is still very early days, so I would feel that although it is frustrating, you need to just hang on in there for the moment. Some things will resolve quickly, others can take weeks, months, even a year or more depending on the severity of the problems and the time it has been around. Gut problems can typically take a few weeks to start to settle down. Try to avoid anything that has any additives, and keep your diet simple.

The only dairy I had at the beginning, or could cope with was the SCD recipe yoghurt, but I can tolerate a little commercial yogurt now. I still have to avoid 'mainstream' dairy though, and may have to stay off that for some time, or even indefinitely.

You are so not alone. This is a HUGE problem. I look around me and just almost everyone is affected by gluten in some way or other. We may feel as though we are in the minority, but in fact we are part of the majority - the majority just don't ever twig that their health problems are related to their constant unending stuffing of gluten foods!

[sickchick]

It's been 8 months for me and I am STILL adjusting my diet.

Gluten free (oct 1st)

I bit the bullet and went off dairy completely (dec 1st)

Soy completely (dec 1st)

Nightshades completely (a few weeks ago)

I eat no vinegar (for years)

I eat no carageenan (march?)

no nitrates no msg no soy lecithin (march)

I buy nothing but organic anything now I can tell a difference.

I am back on Dairy though it doesn't bother me. My trouble is everything else

I can't take any over the counter 'd' meds... they don't touch my chronic 'd'.

I eat psyllium (Yerba Prima) in pills that seems to help bulk up so I am not going all the time.

Good luck and be patient. It's a long hard road Sweetie.

[MELINE]

Is there any chance that you are eating hidden gluten??? Just an idea...

If you are not, maybe you should check for IBS??

To tell you the truth it took me exaclty 3 weeks to have my energy back, but now I am gluten-free for almost 7 months and I still have nausea and other symptoms (but had my gluten accidents these 7 months....)

Someone posted that it would be good to give us a list with the food you are eating just to see if we can come up with any ideas. Maybe you could try that.

But I think you sould know that it takes so much more than 3 weeks to actually feel great. I asked my doctor why I still have nausea and headaches (my biopsy showed that my villy is ok) and he told me it is TOO early. Things feel better but are not perfect yet. Little things in our intestine, called mitohondria (at least that is the greek word-maybe it sounds like this in english too) are not able yet to do their job.

But they will!!! So just be patient. Read the articles in the forum and watch out for cross contamination and hidden gluten in your food. I hope you soon feel better. Your mouth is dry maybe you are dehydrated (is that the right word ? I mean you are losing a lot of water with D and then you don't get it back).

Welcome.

Kisses

Meline

[aikiducky]

Two things that could give a recently diagnosed celiac d, without being another intolerance, are too much fiber and too much fat. Simply because your intestine might be too damaged right now to digest them properly.

So you could try to cook your veggies to mush for now, and avoid chips and that kind of very fatty stuff. If that doesn't help, then look at cutting out other foods.

Check that no gluten is sneaking in from an unexpected source.

I agree it might be a good idea to skip even the lactose free milk for now. You can try to reintroduce it later but milk isn't really easy to digest...

Pauliina