Feel crummy

[Jan G]

My relapse was in January of this year. I have been on Entocort 9mg since then. I had the Enterolab test and I reacted to everything, gluten, dairy, eggs and soy and then a bunch of other stuff. I have been gf, df, egg free and soy free since the end of March. The D stopped sometime in Feb, once the entocort kicked in, but I still feel crummy. I am fatigued most days, my back issues have been worse, just over all I don't feel well.

I do have the side effect from entocort of hand tremors to add to the list.

Is feeling crummy normal? When do you know if you are healed? I am seeing the GI on Monday and I am sure he will start reducing the entocort, which is fine but I want to feel better. I don't remember feeling this bad when I was first diagnosed.

Any suggestions?

Ugh. Jan

[tex]

Is feeling crummy normal?

It is until we have done enough healing, but most people feel much better if they take Entocort, because it should mask most of the worst symptoms.

When do you know if you are healed?

It took me a long time to heal (it took about a year and a half after I started avoiding gluten, until I finally figured out the other foods to avoid, and then I achieved remission from the D. And then it took about another year and a half on a very restricted diet, until I had healed enough that I could begin to add a few foods (such as fruit and veggies) back into my diet.

During that first year and a half, more often than not, when I woke up in the morning I felt as though I had been run over by a truck or hit by a freight train. But somewhere during that last year and a half period, one morning I woke up and suddenly realized that I felt better than I had felt in at least 15 or 20 years. I've heard other members make a similar statement. IOW, it will be obvious when you are finally fully healed.

I would suggest that you check and double check your diet very carefully, to see if traces of any of your food sensitivities are slipping past your scrutiny. Check your medications and any vitamins or other supplements, also. Don't lick envelopes or stamps — they can contain gluten. Check your lipstick if you use it. Avoid chewing any gum, unless you are very, very sure that it does not contain gluten, because most of it is dusted with flour of some type to prevent it from sticking together. Be suspicious of everything that goes in or near your mouth, including any soap residues on your husband's skin. IOW, be sure that he isn't using a soap that contains gluten, because if it does, just kissing him, etc., could cause a reaction.

My guess is that since you obviously have neurological symptoms due to the Entocort, it may be the reason why you feel crummy. In that case you will have to decide if Entocort's benefits (no D) outweigh the disadvantages (neurological and physiological side effects).

When you had your last CBC, were your iron levels OK? Have you had your vitamin B-12 level checked? A B-12 deficiency can cause neurological symptoms.

Tex

[Gabes-Apg]

Jan ,
Sorry you are having a rough time.

Further to tex's suggestions, how are your vit d3 levels.

With a very strict gf/df/sf/yf, small amt of ingriedients, with focus on low inflammation, leaky gut healing, it took me over a year to feel good.

I had to modify my lifestyle to reduce stress, (as stress is one of my main triggers)
Given how you are feeling, it is only natural that this many changes can seem overwhelming. Take it a step at a time, and if you give it time, healing will accurate, and you will get energy and focus back.
It is worth every ounce of effort.

[Leah]

It might be time to wean off the Entocort. just remember to do it very slowly. you might begin to notice other foods that you might be reactive to as your dosage goes down.
Hope you feel better soon.
leah

[Jan G]

Tex, thanks for all the info. It never occurred to me that soaps and lip balms, etc could contain gluten or soy. I checked my lip balms, which I am addicted to, and they all contain soy. They are now in the trash. I will check on the soaps we use also. I will have my iron and B-12 checked as well. Being gluten free is easy. Being gf/sf/df/ef is overwhelming.

The neurological symptoms are scary so I need to make a decision on that. Are they reversible once you go off of entocort?

Thanks Gabes - stress is a big trigger for me. And it's so hard to avoid.

Thanks Leah, I'm going to make that decision but I need to be 100% sure my diet is cleaned up along with any products that I could be reacting too.

I know I am being a sissy but all I want to do is take a year long nap..........

[Jan G]

Gabes - I also wanted to add that I take 8000 units of vit D everyday.

[tex]

The neurological symptoms are scary so I need to make a decision on that. Are they reversible once you go off of entocort?

Yes, except in a few cases where the symptoms are allowed to persist for a long period of time (many months or years), or in cases of overdose or severe sensitivity, especially when other complicating issues are present. For most of us, the risk of permanent damage is relatively low.

By contrast, the risk of neurological damage due to untreated gluten sensitivity is much higher. For example, I have peripheral neuropathy (similar to what can happen with diabetes, except that I am not diabetic), gluten ataxia, balance issues, gait issues, etc., because of gluten damage to my brain and central nervous system before I figured out the problem. And I have never taken an oral corticosteroid.

Tex

[Jan G]

Great explanation on both sides (taking the med vs the damage of gluten) of this issue, very interesting. Sorry for you experience Tex.

As always, I get the best info and support on this forum. I so appreciate it!