Gluten free is working, i think.

[Missing Healthy]

Hello again,

I joined this forum not too long ago when I was in bad pain and looking for help. Many of you suggested trying to eat gluten free again and I would like to post an update.

I started a GF diet while I was on 9mg Entocort. A family member did a majority of the cooking and shopping. Almost immediately the pain had gone and stayed gone for a bit. That was the only improvement and then eventually I felt crappy again and got frustrated and gave in. Unfortunately I had my gluten relapse at the same time I started tapering off Entocort so I assumed I was feeling worse from not having the medicine anymore.

I continued to feel worse every day until 6 days ago I re read all of your advice on my first post and it re-motivated me. I built a separate pantry and purchased a mini fridge, did all grocery shopping myself and started eating only food I prepared myself. The next day I felt better. Overnight I went from roughly 6 daily BM's (which was increasing rapidly every day) to about 3. Am now down to an average of 2. The best part is that I am getting better while decreasing my Entocort. I have been on 3mgs now for 5 days.

So so far, unless it is an amazing coincidence, you were right. Have a few more questions now though and some may be graphic.
1) My stool is yellow 50% of the time since Ive been GF. I assume this is because Im eating a lot of corn based breads instead of wheat.

2) Every time I eat GF I lose weight very fast. I lost 5 pounds this week. Whenever I tell this to someone they say "oh your so lucky". No. Im 6ft 24 year old male and I weight 150 lbs. I am very skinny and cannot lose any more weight. The only way I found to prevent this weight loss is to lift weights daily but I dont have the energy to do this since I just started an internship on top of another part time job and college.

3) I dont think this is gluten related but it does have to do with my GI. Possibly a malabsorption thing. I felt it before when I was at my worst. Ive started to wake up every morning with an extremely painful charley horse in my calf muscle. It can happen in either leg. My best guess is to hydrate more and take vitamin D supplements but I have avoided vitamins because of the GF diet (dont know whats in them).

4) More gas. So much more that I can feel it in my chest sometimes. Thought I was having an asthma problem because it feels like air is being slowly forced out of my lungs. I have been adding lots of veggies to my food so my best guess was to eliminate some of them after being GF for 2 weeks. I have no reason for this theory, it is a guess based on a hunch.


Have you experiences any of these things?

[sarkin]

Glad you're feeling better. It doesn't sound like a coincidence to me

For your leg cramps, magnesium can help - I am using it topically (as are several others here), because taking magnesium orally can have a laxative effect. No thanks! You can buy nigari flakes, which are magnesium chloride (used to make tofu), and dissolve them in water to make magnesium 'oil' (though it's not an oil, of course - super-saturate the preparation you're making). Then you spray it on. I leave it on all day, but many people spray it on, then shower it off 20 minutes or so later (after breakfast, or a walk). It does help with leg cramps. I agree about not adding supplements till you find safe ones. You can increase your Vitamin D by getting a good dose of sunshine as many days as possible.

Until you're more healed, huge amounts of veggies are not a great idea. Smaller amounts, and well cooked, is a better way to go.

Yellow stool can mean a lot of things, including mucus. Fiber would make that worse, but some mucus is probably just going to be present until your gut is more healed.

To keep your weight up, you may need to eat more meat than you are used to. The protein is important for healing - and until you are more healed, you may have trouble keeping your weight up. Many of us struggle with weight loss periodically, but not all. I was fortunate to be able to stabilize my weight after losing only about 12 pounds. At 6ft and 150, you're not technically underweight yet (yeah, those 'averages are B.S.'... but they're useful as a crude tool). You concentrate on healing, and eating only foods that work, and hopefully the weight should take care of itself. I also carry much more food with me than I ever used to. When you feel better, your appetite might also improve.

It's also possible that even without gluten, you are still eating something that does not agree with you. It's common for the 'honeymoon' period of GF to be followed by the next food intolerance rearing its head. Chances are good that will be dairy (unfortunately, because that's a great way to fatten up). You might want to try dairy-free, too, while you still have the Entocort around. It would be a shame to wean off the Entocort only to discover you're right back where you started because another food is inflaming your system. The way you've described it, it sounds like a reaction I've had after eating something I later realized I needed to eliminate (but I don't know that for sure, of course).

Hope this helps,

Sara

[tex]

Hi,

Good for you. It sounds as though you're definitely on the path to recovery. Please don't be discouraged if at some point your symptoms begin to deteriorate again - that's usually just a sign that your immune system has discovered the next most significant food sensitivity. Most of us are also sensitive to casein, (the primary protein in all dairy products), and as our gluten antibodies begin to diminish, our immune system will stop focusing on gluten, and it will "discover" the casein antibodies, and begin reacting to them, (unless you're already avoiding casein). About half of us are also sensitive to soy, so that can sometimes be the third food sensitivity to show up, (unless soy is eliminated from the diet early on), of course.

The medical community seems to be unaware that the immune system tends to concentrate on only one "invader" at a time, whether it be a parasite, a bacterium, or a food sensitivity, but we have found by experience that the immune system focuses on the single issue that it perceives as the greatest threat, at any given point in time. Gluten antibodies have a relatively long half-life, so quite often, members will enjoy remission for several weeks to a month or so, only to fall out of remission as the gluten antibodies fade away, and their immune system begins reacting to the next "allergen" in the hierarchy.

1) My stool is yellow 50% of the time since Ive been GF. I assume this is because Im eating a lot of corn based breads instead of wheat.

Yellow stool typically means that you are simply still having faster than normal motility. Stool get it's color from bile, and since the color transition is a time-dependent process, the faster the transit time, the fainter the color.

2) Every time I eat GF I lose weight very fast. I lost 5 pounds this week. Whenever I tell this to someone they say "oh your so lucky". No. Im 6ft 24 year old male and I weight 150 lbs. I am very skinny and cannot lose any more weight.

Your diet probably just needs more calories, (preferably in the form of protein and fat - rather than carbs). However, be aware that until our gut has time to heal, many/most of us have a nutrient malabsorption problem, and the weight loss problem will begin to reverse, after your gut has made some progress healing. Please don't expect overnight success, though. It took a while for the damage from gluten to accrue, and it will take a while for it to heal. Note that many people experience weight gains while taking Entocort. (It helps to mask the inflammation). You would probably be less likely to lose more weight while your gut is healing, if you continue to take a higher dose of Entocort. I agree, though, that taking a corticosteroid is a poor way to gain weight, and it doesn't work for everyone, but in many cases, it stimulates the appetite.

3) I dont think this is gluten related but it does have to do with my GI. Possibly a malabsorption thing. I felt it before when I was at my worst. Ive started to wake up every morning with an extremely painful charley horse in my calf muscle.

As Sara mentioned, it may not be coincidental. It's almost surely gluten-related - a malabsorption issue. We tend to be deficient in the "B" vitamins, especially, (particularly B-12), and potassium, vitamin D, (as you mentioned), and as Sara pointed out, a magnesium deficiency is often the primary culprit when leg/foot cramps, and/or restless leg syndrome are a problem. As she described, be careful with an oral magnesium supplement, though, because magnesium is indeed a laxative.

You're correct to be wary of vitamins, because many of them contain problem ingredients, and pharmaceuticals are exempt from the food labeling laws, anyway, so most labeling of meds is done on a voluntary basis. By law, only the active ingredients have to be noted on the label. Many members here use Freeda vitamins. In general they are some of the safest available, for people with multiple food sensitivities.

http://www.freedavitamins.com/

4) More gas. So much more that I can feel it in my chest sometimes. Thought I was having an asthma problem because it feels like air is being slowly forced out of my lungs. I have been adding lots of veggies to my food so my best guess was to eliminate some of them after being GF for 2 weeks. I have no reason for this theory, it is a guess based on a hunch.

You are probably correct about the veggies causing the gas. Certain ones are worse than others. The gas is probably coming from the fermentation of the fiber in those veggies. We do best with only small servings of a few easy to digest veggies, and they should always be peeled, and overcooked, (while we are still healing). In general, fiber is not our friend, while we are trying to heal, and we have to minimize it. Fiber can actually prevent remission, by perpetuating the inflammation, (believe it or not, fiber promotes regularity by actually tearing the cells of the mucosa in the colon, which causes the mucosa to produce more mucus, in an effort to protect itself from whatever is injuring it, which improves motility). In addition to exacerbating the inflammation, fiber tends to ferment in the colon, producing gas and bloating.

However, if you are still eating dairy products, dairy might be the cause of your bloating and gas, because everyone is lactose intolerant, while they are experiencing enteritis, due to an inflammation-induced enzyme deficiency. After we achieve remission, enzyme production will return to normal, and we can reintroduce increasing amounts of fiber back into our diet, but remember that healing takes a while - typically around a year or more, though remission should arrive much sooner than that.

Have you experiences any of these things?

Yep, been there, done that. All of what you are experiencing is common with this disease.

You're well on your way - please keep us posted, and don't be hesitant to ask questions, when you're not sure about something that's bothering you.

Thanks for the update.

Tex

[Missing Healthy]

Thank you Tex and Sara. Very helpful.

What are your thoughts on probiotics? Pre-diagnosis I tested many things to try to figure out what the docs could not. Only 2 things put me very close to normal (closer than any medication in fact). The first, gluten free diet. The second is probiotics. The first month of probiotics I took Culturelle then I switched it up to different things like 3lac, Align, etc. None seemed to work as well but when I went back to Culturelle I got terrible headaches every time I took it. Its been over a year since this so Im willing to try again if it wont hurt me.

MH

[tex]

Theoretically, probiotics should be helpful for IBDs, including MC. The reality is, though, finding the right one seems to be rather difficult for most of us. What works for one, rarely works for others, and many of us find that some probiotics make the symptoms much worse. A few members have found one that seems to be quite beneficial for them, though.

If I recall correctly, Culturelle now has a version that is dairy-free. If that's not the one that you tried, you might give it a try, to see if it works for you. Most of us are sensitive to all dairy products, so many of us tend to react to probiotics that contain lactose.

You're most welcome,
Tex

[Gloria]

Dr. Fine is selling DF Culturelle on a website. I have found it for as low as $15 through The Vitamin Shoppe online. If there is a store near you, they will honor the web price.

I don't know about the headaches. I've never gotten them from taking Culturelle, but I've always taken the dairy-free version.

Gloria

[dolson]

To Missing Healthy: Cramps, spasms and pain can be alleviated by taking potassium or Vit K. Being a diabetic, I get pain in my feet. Potassium helps. I take one or two 99 mg of potassium when the pain and cramps start and the vitamins work right away. No more cramps and pain. Plus you could be potassium deficient. Dorothy