2 Months - Feel Worse! :(

[sean24]

Hi I was diagnosed with Celiac disease about 2 months ago. My symptoms are chronic abdominal pain, nausea insomnia, fatigue, heartburn, anxiety. Since my diagnoses I have been strictly gluten free, have avoided all cross-contamination and not glutenated once.

It's been two months. And my symptoms have worsened. My doctor told me as soon as I went gluten free the villi would start to heal. So logically my symptoms should have decreased even slightly! And deffinately not gotten worse!

I know that it can sometimes take a long time for the symptoms to completely dissapeer. But something is not right here- I feel much worse than I did when I was on 100% gluten diet.

Any advice would be appreciated.

[mushroom]

Hello, and welcome to the forum.

Were you diagnosed by both blood panel and biopsy? I ask this to verify if you know if you have damage to your villi. If you do, you are most probably lactose intolerant (temporarily) as well as gluten, because the enzyme that digests the lactose in milk sugars is made in the part of the small intestine that is damaged by gluten. If you try cutting out all dairy products and that helps, then you can challenge with a glass of milk or eat some ice cream. If that brings it back, go dairy free again, and then try eating some hard cheese like cheddar or parmesan. If that has no effect on you, then you are lactose intolerant only. If you react to cheese, you may also be intolerant to the casein (protein) in milk. You will have to wait until your small intestine heals before you completely decide on dairy, but if I were you I would eliminate it totally right now. This could be why you are not getting better. Also, many people go through a period of gluten withdrawal, similiar to nicotine or heroin withdrawal, because gluten does have addictive properties, and this can make you feel worse to start with. Withdrawal for those who experience it lasts a varying time; you should be near the end of it if that is what it is.

It is true that the healing process is able to begin as soon as the gluten disappears;but it takes a while to track down all the hidden sources of gluten. During this time it is easiest if you don't eat out at restaurants or any other place but your own home and thoroughly read the label of everything. Replace the kitchen utensils that could be contaminated with gluten, thoroughly read all labels, don't kiss a gluten-eating girlfriend unless she brushes her teeth and wears gluten free lip gloss... it's amazing where you will find gluten. And always wash your hands! After feeding the dog or cat, touching things that gluten eaters have touched... If you have done all these things, have not eaten any dairy, have bought a new toaster and colander, keep separate jars/tubs of spread and preserves and nut butters, etc., and still see no improvement after another month, then it's time to take stock, Some people are more sensitive to trace gluten than others; it will take you a while to determine your level of sensitivity.

Be of good heart. It took you a long time to get sick and it may take you just as long to get better, but I agree, unless you have other intolerances (and you would be surprised how many of us do) you should soon start to feel better if you follow these rules. So be even more strict than you have been, check your scrips and OTC meds, your shampoo -- really anything that comes into contact with our body that has a chance of getting into it. And let us know what and how you are doing

[GFinDC]

Shroomie has excellent advice above. She is right, check weverything, even things you think don't matter. It seems like people get more sensitive to gluten after they go gluten-free. That may not be what actually happens, it could just be their symptoms are more noticeable. But it is really good to keep away from even small amounts of gluten. The immune response will taper off after a while, but it gets re-ignited with every gluten exposure.

Some getting started tips:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

[sean24]

I was diagnosed by biopsy. I have already taken every precautionary measure you suggested above since day 1 of gluten free diet. I wen't lactose free a week later after consulting a dietitian. I also take probiotics and vitamins.

I have had a large loss of appetite recently. I have lost a lot of weight (I'm only 17 and am now very skinny). It makes no difference to my symptoms when I eat barely anything to when I eat a lot.

[L.J.]

Hi Sean 24...

This is such a difficult issue, yes? Gut issues, seepage issues, etc. etc. (You know what I mean, yea?) Please hang in there-- it does get better!!!! I went from not knowing anything to eat (i.e. afraid to eat) to finding out what I could eat!!!! You will find out the foods you can eat (ohhhh...they vary from all of us) but *YOU* will figure this out!

A Food Log of *everything* you eat--and cannot eat*-- They are the difficult ones, yes???? But keep a food diary--a "safe food List" of the foods you believe you can eat--- Have them on hand-- bcause with gluten-free, there are times you think you are "STARVING"... (at least I felt that way) And so I was! Truly......... Lost some weight.........but now, when I want 1 pounds of steak-- (true) I will eat it! And, guess, what, I felt better! Yeah, kind of impossible to believe, eh?

Keep posting here...ask questions----you will find the most incredible info around! (It is true) !!!!

[GFinDC]

Hi Sean,

If you are skinny and losing weight it would be a good idea to see your doctor again. Insomnia and anxiety are symptoms of hyper-thyroid, and other things, including celiac. But it wouldn't hurt to have your thyroid levels checked. Some other symptoms are elevated heart rate and irritability. If you aren't hungry it would make sense to get your blood sugar checked also. May as well rule out some other things at the same time. Stomach pain can be from celiac and or H. Pylori. So it might be good to have that tested also. The thing is, all the symptoms you listed in your first post can be caused by celiac and other things also. Until you eliminate a few of them you just won't know. Or you can wait a few months and see if things improve. Some of us have symptoms that continue for months or more after going gluten-free. Doctors don't always recognize that. But just in case it is something else having a few routine tests run is not going to hurt anything. Lack of appetite can be caused by bloating in the stomach, which happens fairly often at the beginning. Sometimes people heal for a while and then gain their appetite back also. If you go to a doctor, please take time to write down your symptoms and a food log for a few days at least. That may help them figure out what it is going on. For me it is easy to forget to tell the doctor something while I am actually there, so writing it down helps prevent that. You can give the doctor a copy for their review ahead of time or the day you visit. You could also post a list of the foods you are eating to get input from people here. Just in case there is something hidden in the foods that others mauy recognize as a problem.

[cavernio]

Most probiotics aren't dairy free. They're cultured on dairy. Lactose free is not dairy free, so unless you're ordering or have found a special dairy free probiotic, then no you have not taken all the measures mushroom mentioned.

If you have serious vitamin deficiencies they may get worse initially being gluten free because gluten initiates a leaky gut in celiacs, (which I figure would cause nutrients as well as bad things into the bloodstream.) But without leaky gut and with a damaged small intestine as it will be at the beginning of being gluten free, you probably aren't absorbing nearly enough. If it is nutritional deficiencies you have to take a good look at the amount in your vitamins. I find most multivitamins don't have enough of most things to replenish a depleted store as they barely contain enough to meet daily recommended intake. Plus some vitamins, when in pill form, aren't absorbed as readily as in a natural form, so you actually have to take ten times or more the recommended daily amount. And then of course pretty much all metals (iron, zinc, magnesium) compete for the same absorption process so taking them all at once in a single pill you're just going to be crapping away a lot of it. But of course you don't want to be overdoing it for some vitamins, because that can also cause serious side-effects too. Like too much B6 can cause nerve damage, while too little B6 also causes nerve damage. It's all very confusing, so it really is a good idea to get your nutrient levels checked.

Many people find other food intolerances as you can see from the giant lists of people's food intolerances. While it might seem like nothing you do makes a difference (like when you only eat a little), that's really not good enough to really know if there's another serious sensitivity. Like if you only ate a little gluten everyday you know that's not good enough and you'd still inevitably get sick. The same may go for another food you regularly eat, not just dairy.

Finally, you may not think you're getting cross contaminated, but many processed gluten free foods do contain trace amounts of gluten. They're supposed to be safe and for the majority of celiacs they are, but for a handful of celiacs and gluten sensitives it's still enough to make them feel sick. You may be one of those people. If you think this might be you then only eat fresh fruits, veggies and meats. Nothing processed.

I would consult your doctor regardless though. There could also be something else wrong with you.