Weight loss and CC

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dpaschal
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Weight loss and CC

Post by dpaschal »

I've been a member for your website for several months and this is the first time I have tried to post something. I hope I posted it in the correct place. Before I get started, I want to say your site has been very helpful in knowing I'm not in this alone. You all are so supportive of each other.
I am 43 years old and only weight 84 pounds. I was diagnosed with LC and over growth bacteria in the small intestine about 3 yrs ago. I started taking entocort ec for the LC and antibiotic, yogurt and probiotic for the over growth bacteria and it got better for about 2 - 2 1/2 years and then the problems started again only way worse. In November 2009 I was admitted into the hospital, so sick I could hardly hold my head up. Everything I put in my mouth came right back out, even the pills I was taking came out looking almost like they did when I swallowed them. I was having 10 to 15 bile movements a day sometimes more. They ran several test thinking it was my gall bladder and the only thing they could find wrong was my potassium was way to low and my MVC was 102.5. Some of my other blood work was also off but they said not enough to worry about. The doctor told me he could not find anything wrong with me, so he was going to have to let me go home. He suggested I go back to Birmingham, which is where I went 3 yrs ago. I went back to Birmingham and they discoved that I had CC. The doctor there put me on Imuran and it made me even worse, to be honest I was ready to die. The doctor told me to stop taking the Imuran and to start taking Welchol 625 mg 3 caplules twice a day. It helped a little but I continued to lose weight and still had mild D. The doctor decided to do a upper endoscopy. The results was moderate villous blunting with increased intraepithelial t-lymphocytes suggestive of celiac disease. He then decided to do more blood work he ran a IgA antibody, tissue transglutaminase antibody, and a Prometheus assay for celiac genetics, all came back negitive.
I have not started the gluten free or celiac spruce diet yet in fear of lossing more weight. The weight lose is very depressing, I hate to look in the mirror. I can't lose any more weight.

Donna
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Post by Polly »

Hi Donna and a great big :welcome:

My oh my, you have certainly had a rough time over the past 3 years. :cry: But, since you have been reading the posts on this website, you know that you WILL get your life back. Remission is on the horizon.

Your weight is of concern, that's for sure. I would guess you have lost the weight due to malabsorption. Your endoscopy showed "evidence of celiac disease", which means that those villae in the small intestine have been damaged by gluten and can no longer absorb nutrients. Thus you are wasting away, so to speak. Your findings are clearcut, IMHO, and you will need to begin avoiding gluten ASAP. Only when the gluten is gone from your diet, and those villae heal, will you be able to gain weight again.

In a way, you are luckier than many with MC. I say this because the gluten sensitivity that many of us have is NOT picked up on endoscopy (because the villae have not yet been damaged) . In your case, the damage was already present and obvious, so you have an indisputable diagnosis of gluten sensitivity. By the way, most of us also have negative blood tests for celiac disease (IgA antibody, tissue transaminase) but still remain highly sensitive to gluten, just like you. And unfortunately, the bulk of the medical community is totally CLUELESS about the fact that gluten sensitivity occurs even in the face of negative celiac blood tests. Your genetic assay was probably "negative" because you did not have either one of the major celiac genes (DQ2 or DQ8). However, there are many additional genes that predispose to gluten sensitivity that have been discovered by Dr. Fine (check out www.finerhealth.com, especially for the article about finding gluten sensitivity before the villae are damaged). Also take a look at the poll here on this website where folks listed their gene tests.

I know this is a lot of info to digest (pun intended), so please ask any and all questions you have. There is great info here in Dee's Kitchen about GF options as well as many members who will be more than happy to help with learning to live GF. Looking forward to further chats. You will soon be on the road to recovery! I promise.

Love,

Polly
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Post by starfire »

:welcome: And I'm so glad you decided to post. You have certainly been through the wringer and I understand your fear of losing more weight but if you don't at least eliminate gluten I don't think you have a chance of improving. I agree with Polly (of course) in all that she said.

Please continue to read the wealth of information on the site and please continue posting about your concerns and whatever else you care to share. Also, know that you can discuss absolutely anything connected with our health problems - we can handle gross. :smile:

Shirley
When the eagles are silent, the parrots begin to jabber"
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Post by tex »

Hi Donna,

Welcome to our internet family. I totally understand your concern about your low weight, but believe me, gluten will not allow you to gain any weight - it is poison to your body, and the sooner you totally eliminate it from your diet, the sooner your health, (and your weight), will return. I totally agree with Polly's suggestions, for 2 reasons.

1. She has this disease herself, and she has successfully controlled it by diet alone, for roughly 8 to 10 years, now.

2. She is a medical doctor, and after much research, and living with the disease for years, she understands it far, far better than probably at least 99% of the GI specialists in this country. No one truly understands this disease, unless they have it.

For anyone who is sensitive to it, gluten has such a powerful effect on the body, that it makes us think that gluten is not the problem - it makes us crave gluten, and we seem to react to everything except gluten. Not only that, but because of this powerful effect, the immune system produces antibodies to gluten, for up to two years after gluten is eliminated from the diet, which keeps our immune system on high alert, and keeps our intestines hypersensitive to irritation, for many months after it is removed from the diet.

True, the blood tests will not detect gluten antibodies for those of us with MC, who do not have fully-developed celiac disease, but that's because those antibodies are in the stool, not in the blood, (which is logical, since the antibodies are generated in the intestines) - the doctors are looking in the wrong place, (because they simply don't know any better). The antibodies will not leak into the bloodstream, until celiac disease has matured, and that can take years of suffering, before it develops to the point where the blood tests will yield positive results.

I've been where you are now - at one time, I was so thin that it was painful to sit in a bathtub, or on a hard chair, because there was nothing between my bones and that bathtub or chair, except a thin layer of skin. That was a miserable time in my life. I didn't recognize myself, when I looked in the mirror. Then I found out about gluten, and eliminated it from my diet, and I was able to gain weight, again. It literally turned my life around, and I shudder to think where I would be now, if I hadn't made that change, 8 years ago.

You are part of our family now, and we will help you in any way we can, but only you can turn your life around - we can't force you to do anything. All we can do is to share our experiences, and tell you why we are in remission now, and once again enjoying life.

As Polly pointed out, the damage to the villi of your small intestine absolutely removes all doubt that you are gluten-sensitive. That damage is what prevents you from being able to absorb any nutrients. As long as you continue to ingest gluten, that damage can only get worse - gluten is effectively starving your body, by blocking the absorption of vital nutrients.

Please feel free to ask anything - there are no dumb questions, connected with this disease. The medical community is totally confused by this disease, so it's no wonder that everyone else is, also. Incidentally, the Birmingham discovery that you have CC, is pretty much irrelevant - it's still the same disease, (with a different name) - the clinical symptoms are the same, and the treatment is the same.

Again welcome aboard,

Tex (Wayne)
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Joefnh »

Donna welcome the family here. While I can not speak with the knowledge of Polly & Tex, I will say that at least for me gluten and soy were the 2 items that will cause this disease to flare up immediately, even while on entocort (a steroid).

You certainly have had a rough time and as mentioned it will improve once the dietary issues are addressed. In my case in April I was in a similar situation to you in that nothing at all would stay in me until I was put on IV steroids and IV nutrition. I fortunately did not have as much weight loss as you, not being able to absorb nutrients will cause the weight loss as the body is essentially starving.

I would certainly strongly encourage the dietary changes and if needed medications that your doctor may recommend, from the many experiences of the members of this group, once you are on the right path things will improve.

Donna I do wish you the best, I know times are hard right now but a brighter future is just ahead. Feel free to post anything on this site, it has been such a great experience to have such knowledgeable people like Polly and Tex on this site.


Take care and best wishes Donna

--Joe
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Weight Loss and CC

Post by dpaschal »

I want to thank each of you so very much for the feedback, it has really helped me in so many ways. I am so thankful that I found your website. It is so sad that we have so many doctors that do not have a clue what we all are going through, and they are not trying to learn more about it. Over the past 9 months, I have seen so many Dr that I've lost count. All of them look and talk to me like I am dreaming all of this up. I had one that wrote in has reports that he was going to go ahead and do the endoscopy but did not feel like he was going to find anything because he felt like this was all just functional. Maybe I miss understood what he meant by that but I took it as he didn't think anything was wrong with me. Even with the weight loss they don't seem to see there is a problem. Not one doctor has told me to change my diet or said that I need a nutritional IV. Tex, I totally understand the phase about being just skin and bones because like you said I can't sit or lay on anything that is hard.
After going back to the doctor last week and him telling me that I needed to start back on the Imuran, which I can't do because I feel bad enough without making things worse. I came home and that night told my husband that I was ready to go home and be with the Lord because I just didn't think I could take this any longer. Don't worry, I would never do anything stupid to myself because I have a 16 and 17 year old that is my world and I know they need me.

Here is a question that I would like your advise on. I have only had a sigmoidoscopy done since this last flare up. Do you think it would be wise to have a complete colonoscope done being that they have removed several polys from my colon during past colonoscopys which was about 3 years ago? I find it very strange that with all the test I've been through that not one dr has suggest a full colonoscopy. I do have a small worry of colon cancer being that I lost a uncle from it. With all the reading I've done I know that CC done not carry a risk of turning into cancer so that helps my worries a great deal. If it was you what would you do.

With all of you on my side I do know there is going to be brighter days ahead. Finally someone that understands where I am coming from. I am going to get started right away on the diet and have full faith that I will be on the road to recovery. Again I can never thank all of you enough for this website. You all spend countless hours of your time trying to help people like me that you don't even know. That tells me that you all have a huge heart and are very loving and caring people.

I am on several of the Churches prayer list in my areas and I feel like the Lord has answered every pray now that I found you all.

Donna
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Post by Joefnh »

Donna if you can tolerate a colonoscopy it may be a good idea to have the biopsies look for MC. Given your weight and condition I wonder how well you tolerate the prep. Polly may want to comment here. Overall the colonoscopy would be an important diagnostic tool.

In April I felt a bit like Job wondering how much more I could take...


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Post by harma »

Hello Donna, :welcome:. I totally agree with pollly, shirley, tex and joe. They've already provided you with great advice. I am like you so grateful I found this website last year just after I was diagnosed with CC. I sincerely hope that you will start feeling better real soon, once you have started the gluten free diet.

harma
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Post by Polly »

Hi again Donna,

If I understand correctly, you had a full colonoscopy 3 years ago that showed LC (one of the 2 major types of MC, with CC being the other). Thus, I don't believe you need another one at this point as far as the colitis is concerned. The LC diagnosis is still valid, so to speak. Regarding the polyps, however, each doc may have a different schedule for the repeat colonoscopy, based upon individual medical history. Mine recommends every 5 years for me - I have had polyps on 2 previous occasions and my dad died from colon cancer. Joe was astute to be concerned about the rigors of another colonoscopy just now when you are so frail and malnourished. I would imagine you could wait a bit to repeat it - unless you had oodles of polyps or some other new symptom that concerns your doc, like bleeding. By the way, there is now evidence that supplemental vitamin D helps to prevent polyp formation and therefore eventual colon cancer. You are correct that MC by itself does not lead to an increased incidence of cancer. However, polyps are the problem - they eventually turn into colon cancer. Fortunately, if they are removed early, cancer can be prevented.

Love,

Polly

P.S. You are correct. "Functional" means no medical reason can be found i.e. it's all in your head. Unfortunately, it often means only that the doc has not been educated or clever enough to find the medical reason. Sigh.
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Post by Joefnh »

Your right Tex I did miss the earlier diagnosis of MC. With that said a colonoscopy now would yield no additional diagnostic benefits.

The 5 year colonoscopy should be kept for the polyps though

--Joe
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Post by tex »

Donna,

I believe that Polly has been taking vitamin D longer than most of us, (she's the one who brought the benefits of vitamin D3 to our attention, originally), and you may have noticed her recent post about her last colonoscopy exam - this time, no polyps were found. That's very encouraging evidence that vitamin D does indeed work. Vitamin D can't eliminate any polyps that already exist, but apparently it can prevent new ones from forming, and if they can't form in the first place, then they certainly can't ever cause any problems.

You are certainly correct that we care about each other, (and about anyone and everyone with this debilitating disease), because we know first-hand, how miserable the symptoms can be, and we understand how lonely, isolated, and hopeless it can cause us to feel, especially when our doctors tell us that "it's all in our head", or "it's just a nuisance disease". Here, everyone understands, and we are always here, if you need support, have a question, have some good or bad news to share, or if you just need a place to vent your frustrations, because you're having a bad day.

I wish you had found us sooner, because it takes a while to conquer this disease, but your days will begin to get better and better, as you start down the path that will lead you back to good health. This is a historic day, because it's your first day on that journey, on your quest to get your life back.

Tex

P. S. Sorry, Joe, I had to sidetrack my post, to make major adjustments to it, after Polly's response was posted before mine, (since there was no point in me repeating much of what she had already said).
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Post by kimtg68 »

Welcome Donna! This place, as I see you have already picked up on, is wonderful for advice, education and support. I'm SO glad that you found it. I feel just awful for you and what you are going through. I know you probably don't feel this way, but remember God does not put more on you then you can handle. You may need to ask Him to carry more for you. We never know why things happen to us but never loose sight of Him.
I don't understand why your doctor never told you to eliminate gluten from your diet since they found moderate villous blunting with increased intraepithelial t-lymphocytes suggestive of celiac disease. I know you don't feel well and emotionally and physically you are beat down but I beg you to read, read, read many of the different posts on here and most importantly KNOW you are not crazy and yes your body is telling you much is going wrong. I personnally believe (and I'm no doctor) that you've had the tests and been diagnosised but the treatments obviously aren't working for you with med's alone. What do you have to loose at this point to try going gluten free. Heck, if you can afford it, do the Enterolab test and perhaps you will find that not only are you gluten intollerant but maybe other things as well. I'd hate for you to attempt the gluten free diet and still endure problems and then get discouraged. GO FOR IT! Find out what your body is telling you as far as the foods that you eat and avoid them. You may find as many others on here have that after changing your diet you will feel better than you have in years. And after what you've been through I think you MUCH deserve to feel on top the world! I wish you luch Donna!!!!

Oh and one more thing.......you mentioned Birmingham. Is that Alabama? I'm going to Birmingham soon myself to see docs at UAB.
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Post by dpaschal »

It is Birmingham Alabama. I read someone post last night were they said they was going to Birmingham, it may have been yours, I am not sure but i was thinking I hope they have better luck than I did this last time. The Dr that found out that I had CC was in Birmingham but she moved away, so I was only able to see her once this last time. The new Dr that I was referred to acted like he just wasn't to concerned, like it was no big deal. On my first visit to see him he never once put a hand on me, to see where my stomach was hurting and how swollen it was. In his report he wrote other than a history of seizure disorder, she is otherwise fairly healthy. At that time I weighted about 89 pounds, I don't call that healthy. All he did was give me more medication to take. It makes me wonder if doctors are just out for another dollar of what. How hard can it be to just tell the person to change their diet and see if it works. Maybe some of you can answer this, do doctors not believe that a diet change can fix MC LC and CC? Oh I forgot, that would stop you from having to go back over and over again. I wish I had half of the money back that I have spent on dr visits, hospital stays and co-pays over the past nine months. I will say, I know that there are some really great doctors out there I just didn't find one.

I want to wish you the best and I pray you to will find an answer. I can say I feel like I am in the right place to get the answers I have so longed for.


Donna
dpaschal
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Weight loss and CC

Post by dpaschal »

Tex and Polly, I have been taking vitamin D-3 for several months now. I take 1000 IU a day is that a good amount?

Donna
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Post by Rosie »

Donna, I don't have anything to add to the excellent advice you have already received, and just want to welcome you to the forum. I too had weight loss, although not as severe as yours. I have put back about 10 lbs, and am not in too bad a spot right now, even if I'l like another 5 lbs.

Rosie
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