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When Will It Get Better?

sunnydayzahead

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sunnydayzahead Rookie
sunnydayzahead
Posted

Hi there...I am new to this forum but have been reading so many posts with such great information it is awesome :)

I have had problems with D and stomach pain for twelve years now and after my first doc putting it down to stress and IBS I just went with that for many years. then two years agao I was sick enough to be hospitalized and ended up with a diagnosis of first ulcerative colitis and then a year later after ongoing symptoms and another scope - they changed the diagnosis to microscopic colitis. At no time during this process was celiac mentioned. I was prescribed entocort and it has put the colitis into remission with flares now and then but once I go back on the entocort for a while it does control it. However I continued to have pain and huge bloating in my stomach and finally my family doc suggested the blood test for celiac which came back definitely positive she said.........and I went gluten free for a while until my GI learned of my celiac status at which time he put me back on gluten - until I could have it confirmed by an edcoscope. No surprise the scope confirmed definite celiac with complete atrophy in the small intestine or something along those lines - he did not have to wait for the biopsy as he could see the damage himself. I have been gluten free since last july but continue to struggle with many symptoms such as severe joint pain, infected lymph nodes, memory loss, anxiety, fatigue etc etc. I am getting very discouraged as I try so hard to go gluten-free but still end up getting glutened some how. I have now had to take a leave from work as my brain fog and memory loss has become so severe, I know I was not doing a good job. I feel defeated by this stupid celiac and cannot believe that gluten can do this much damage to my quality of life. I have always been a very positive and up beat person who deals with anything life throws at me. I have always been healthy and active.

These posts have given me so much information and made me feel that I was not alone, but for you veteran celiacs - tell me how soon you felt like yourself again. It has been so long now, I forget what it feels like to look forward to a family get together or going out for a meal. For me these are just stressful situations so I just enjoy a plain salad and a glass of wine (or three LOL)

Sorry for such a long post and to be such a downer, but I just would love some advice from people who have been dealing with this for a long time and have figured out how to control it and NOT feel like it is controlling me.

Thanks for listening!!

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tictax707 Apprentice
tictax707
Posted

Hi... I too, have microscopic colitis. I was sort of the reverse of you, got diagnosed with celiac first, still had looong episodes of D (weeks!) after eliminating gluten (and diary), and then finally isolated microscopic colitis (that was one year). For your reference, there is also a really great microscopic colitis forum. Not sure if the link will post, but if you google "microscopic colitis forum" it should be the first one that pops up, with the address containing "persky farms" something or other.

Open Original Shared Link

After I got myself some asacol, it probably took another few months for things to start to turn around, and stay that way. My problem was that I would start to get better and then get worse and then get better and then get worse, and I'd do that yo-yoing around for a while, trying not to go crazy. But, I am wondering if there are other food intolerances that are driving you batty. Have you ever tried an elimination diet to see if that can give you any info?

This is a constant process, and after I started accepting the nature of the colitis and began to just eliminate foods if they made me feel bad, i did much better. For a while I would sit in denial about whether a certain food would cause me pain. I mean, it sucks enough weeding out all the gluten (and for me dairy) - now my body was telling me it didnt like things like flax or inulin? Finally I stopped struggling against it and am feeling much more in control actually. I guess what I am saying is that I keep feeling incrementally better and better over the years as I learn more about my body's reactions. AND - the awareness not just of gluten but of other allergens, makes life easier as time goes on. But that's not to say I have been miserable for the past 8 years until now. I've been pretty happy all along the way. Those first two years of really getting things sorted out were the toughest. You say you have a positive attitude, so hang on to it. :) It will get better. It sounds like things are really beating you down right now, and its ok to feel that because we do not have an easy battle to fight. I think having the colitis AND the celiac is really tough.

So ultimatelly my advice is to check out the microscopic colitis forum too. See if you can ID any hidden sources of gluten that are getting you, and investigate the possibility that something else may be behind it if you are confident with the gluten free-ness of your life. :) You CAN and WILL get control of it and get your life back. *HUG* I wish you the best!!

sunnydayzahead Rookie
sunnydayzahead
Posted
  • Author

Hi Tictax

Thank you so much for your wonderful advice and positive words. I really appreciate you taking the time to reply to my post. I will definitely try to check out other food allergies and will remember that getting incrementally better is really what I need to look for - not instant results. I will also check out the colitis info you provided.

Thanks again for sharing your epxerience and your kindness :)

tictax707 Apprentice
tictax707
Posted

You are so very welcome!! I am glad you found us here - at the very least it does help to not feel so "alone." :)

Gluten-Free-Jessie Newbie
Gluten-Free-Jessie
Posted

Hi Sunny! It all comes down to this- celiac disease is one of the most commonly misdiagnosed gastrointestinal issues out there today. I was only 19 going on 20 at the time and for a whole year was stuck in bed, so sick and weak every day that I just wanted to shut out the world. I had lost over 30 pounds in a matter of months. My doc did the same thing yours did: broke it down to stress and ulcers. I was prescribed every ulcer medication under the sun which, in the long run, made things worse. Then one day, my sister (who works in health foods and home remedies) suggested I cut out my gluten intake because a great deal of the folks she works with have celiac disease or are intolerant. I took her advice and only days later I felt a change in my energy levels and my ongoing struggles with nausea had let up, if only just a bit. It took months for the damage to start to reverse itself.

But I still had problems- panic attacks, exhaustion, and still some nausea, even almost two whole years later. Today I am 22 and thanks to the ongoing advice of one of my college professors (a Nevada doc) and the support of some great friends and family, I am starting to feel some true relief.

It does take time, but here are some things to be aware of. If you live in a household that is mixed (gluten-eaters and gluten-frees) be careful of cross contamination- it took me a long time to realize I still was using things like wooden cutting boards and non-stick pans that my family (all of whom eat gluten) were also using. I went out and decided to buy myself some gluten-free kitchen ware. Also, it may take quite a while for your intestinal tract to heal. Many celiacs are sensitive to even the smallest traces of gluten (and sometimes dairy in the earlier stages of healing). I don't eat oats unless they specifically say gluten-free, not packaged in a facility that processes wheat, because they tend to cross contaminate. Even fruits and veggies are tricky because farmers can sometimes use wheat-based pesticides. Organic, although a bit expensive, is the way I've decided to go. I also take supplements, and of course you may want to consult your doc before taking any kind of supplement, but these have worked for me: I take papaya extract- they help with nausea, are tasty, and reasonably inexpensive. I get mine at Trader Joe's, but I know Whole Foods carries them to; glutamine- this helps to heal the intestinal tract. It's harmless and our own bodies make it, it's just we need more sometimes. I get mine in powder form online; finally calcium pyruvate- this has helped bring my energy levels back up. Again, our own bodies make it and it is easy to find in powder form online.

As far as going out to eat- that is the struggle, isn't it? Some places claim gluten-free but don't know squat about cross contamination. The Gluten Free Registry is a good source of eateries. Just be careful and always read reviews.

Anywho, I am sorry for such a long response. I hope I helped more than bored. :blink:

I wish you all the best luck and hope you start to feel better soon!

KuKuKaChoo52 Newbie
KuKuKaChoo52
Posted

I also have been doing this for quite sometime and still get major setbacks. Usually I'm doing fine and then once something sneaks in me I am 'off' for about a week, it varies from a couple days to 2 weeks... I live with my parents while I go to college and they eat gluten, but not a ton of it... They have picked up on the food I eat and found that a lot of it is good, but reading the post above makes me think I am probably still getting gluten through the non stick pans, cutting boards and things like that. Also, I still eat fruits and veggies that are not organic... I think it has been about a year for me doing this and I still don't feel great, but I have noticed being better. Someone told me to think of it like this, before you were always feeling like crap, but now you start to feel good, but when you feel bad it is so much worse because you aren't used to it. I think that makes sense to me and we are all probably getting better, just at a slow rate... I don't have a ton of knowledge to share, but i'm right there with you so keep it up and we can do this!

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