My Lymphocite count was zero in colon. No inflamation or MC.

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showstopa
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My Lymphocite count was zero in colon. No inflamation or MC.

Post by showstopa »

Good afternoon Tex and my MC family. I met with my gastroenterologist first thing this morning and thanks to this board, I was prepared for war.

The Dr. revealed that I have no lymphocyte count in my colon. I learned from the boards here that 10 and below is normal. My Dr. revealed that everything is normal and I also requested the pathology report just as you guys suggested. Thank you.

The problem is that my Dr. would like for me start a "regular" diet and I am horrified of the possibilities of being so constipated or diarrhea and pain, vomiting, that will send me to the hospital. He said that he would prescribe Imodium for the D, something fiber related for the C and something else for the pain. And he told me to start eating gluten ASAP and everything else that would be in a "regular" diet. :???: He also said the he wants to check me for Celiac Disease. But of course, we also know from the boards here that Celiac Disease cant be tested for unless you have gluten in your system. So when he stated that I was able to say that I already know the procedure. He also stated that by me being a black person, that chances are slim that I am celiac but wants to check to be sure. He also says that most likely I have IBS and that their is no test for that.

I am so overwhelmed with my results and instruction today. Good news is that my MC has heeled from my last colonoscopy 4 years ago when I was diagnosed with MC. Chances are that I do have IBS. Did I have IBS and MC at a point of time? Or did my MC somehow caused IBS? I am certain that I have IBS so I am terrified at the thought of introducing more food into my diet. How would I even begin to start to eat for instance bread again? Thank you in advance for everything.
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UkuleleLady
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Post by UkuleleLady »

Hi Showstopa -- I'm sorry your appointment caused you this stress and anxiety. I wouldn't be too crazy either about your doctor's advice to start eating gluten again.

Will you fill us in on your current symptoms? It's unclear if they're present now, or if they were present in the past. It's a good sign your lymphocyte count is down.

Hugs,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
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Post by showstopa »

Hi Ukulelelady,

Thank you for your response. I experience either extreme D or C, stomach cramping, nausea vomiting upper body pain..

I have been on a gluten diary caffeine chocolate soda high fructose corn syrup egg free diet to avoid the most extreme of situations. I was diagnosed with MC 4 years ago after a colonoscopy in 2010.
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tex
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Post by tex »

Hi Showstopa,

In a word, your doctor is "nuts", because he obviously doesn't care how much you might suffer, because of his recommendations. If I were in your shoes I would run, not walk, away from his office, and never return. IMO it should be illegal for doctors to recommend a gluten challenge for patients, just so they can "officially" diagnose celiac disease. It's bad enough to have to be sick free of charge, but to pay someone (your doctor) for advice that will surely make you sicker, seems ridiculous.

Regarding your biopsy report results:

First off, one's intestinal lymphocyte count is never zero. It might only be 2 or 3 lymphocytes per high power field (hpf), but it is never zero. Either the pathology report did not state a count, or your doctor is stretching the truth (to put a lie in polite terms), because it is never zero. When you receive the pathology report, you will see what it actually reported. Probably it simply says that your count is below the level that's considered diagnostic for MC (but that's a long way from zero). Since you have changed your diet, I would expect your lymphocyte count to be down, but I surely wouldn't expect it to be zero. If your lymphocyte count were actually zero, you would be sick all the time from every virus and bacteria that came along, because your immune system would have no guards on duty to prevent infections from getting started.

Secondly, haven't you ever wondered why there is no test to diagnose "IBS"? It's because "IBS" does not exist. "IBS" is a fabricated disease that GI docs invented because it sounds so much more professional to say, You have "IBS!", than to keep having to repeat over and over again, "I don't have the foggiest idea what's wrong with you, but nevertheless, don't forget to pay my outrageous bill on our way out." :lol: "IBS" is typically either the early stages of celiac disease or MC, or simply an overlooked diagnosis (often because of a failure to take biopsy samples during a colonoscopy exam, or a failure to even consider those 2 diseases).

The reason why doctors thought that MC was a "rare" disease for decades was because they were told in med school that MC was a "rare" disease, so they simply didn't look for it. If you don't look for it you can't find it. So that became a self-fulfilling prophecy. The same fallacy applies to the old claim that African-Americans, Asians, and Caribbean residents almost never have celiac disease — it's a self-fulfilling prophecy, because doctors don't look for it.
Most sources state that celiac disease is rare in African Americans and those of Asian and Caribbean background, however data also demonstrates that African Americans susceptible to the disease can frequently be misdiagnosed. Based on information from several reputable sources, some African Americans with Type 1 diabetes have more potential of developing the illness than others, but many African American Type 1 diabetics test negative for the gene predisposing them to celiac disease. These findings notwithstanding, a general under-diagnosis of celiac disease in African Americans is reported in the literature.
Is Celiac Disease A Threat For Blacks?

If your doctor wanted to rule out celiac disease, he should have done that when you first came to him, before you changed your diet. What's his excuse for waiting so long?

If I were in your situation, I would have to think long and hard about doing what your doctor is suggesting, because while it would make him very happy to either diagnose celiac disease or rule it out, you would be the one doing all the suffering. The celiac tests have very poor sensitivity, so you would have to eat gluten for at least 3 or 4 months (or more) in order to cause enough damage to your small intestine to provide a reasonable chance of triggering a positive celiac test result. And if you don't continue eating gluten long enough, you will receive a false negative test result, meaning that you would have gone to all that trouble, and put up with all that suffering, for nothing.

And even if the test result turns out to be positive, the only thing your doctor could tell you would be that you need to avoid gluten. But you already know that, so why go through all that suffering? An official diagnosis would be a feather in your doctor's cap, but it will provide absolutely no benefits for you, because you don't need a diagnosis to avoid gluten. You can avoid gluten without a diagnosis, and you can avoid gluten without a doctor's blessing. And none of us needs to be as sick as a dog for 3 to 6 months (and recovery afterward would probably take just as long) just to make our doctor happy.

At least that's the way I see it. I'm pretty sure that I'm a celiac, because I have a celiac gene, and I had all the symptoms, but I'm not about to do a gluten challenge at this point, because I never want to be that sick again. I don't care whether or not I have an official diagnosis of celiac disease, because as long as I totally avoid gluten (and the other foods that cause me to react) I'm healthy, so why should I care about an official diagnosis — it's a moot point.

I notice that you did not mention avoiding soy. Many of us here are sensitive to soy, and those of us who are, typically are extremely sensitive to it. There is also the possibility that your diet may be cross-contaminated with gluten. If anyone else in your house uses wheat flour, then your food is almost surely cross-contaminated with gluten, no matter how careful you and they might be. I'm speaking from experience here, because I found out the hard way that it's impossible to keep flour dust from settling over everything in the house, including my (and your) food.

I hope that some of this is helpful.

Tex
:cowboy:

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 Gabes-Apg »

in line with Tex's post above,
- your symptoms indicate some sort of inflammation, whether it be triggered by food, environment/chemical, stress, medication (some or all four)
i would check for contamination, or an ingredient like Soy that you may now be reacting strongly to. Keep a journal, this will help identify triggers.
- have you tried anti-histamines. histamine reactions inflammation is very common for MC'ers
- what are your Vit D3 levels? do you take Vit D3? mineral/nutrient deficiencies would be making those symptoms worse.

Whether you/your doctor call it MC, IBS, or any other name. Once MC has been active your gut, your gut and immune system will be hyper active to all triggers.
Symptom free days are reliant on removing or eliminating as much as possible any and all triggers.

hope this helps
Gabes Ryan

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Dalai Lama
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UkuleleLady
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Post by UkuleleLady »

tex wrote:Either the pathology report did not state a count, or your doctor is stretching the truth (to put a lie in polite terms), because it is never zero. When you receive the pathology report, you will see what it actually reported.
Hey Showstopa,

Just realized you had mentioned your results in another post when the nurse also read them over the phone -- and Tex is right, this business about 0 lymphocytes is just BS. Something is amiss. DEMAND to see that pathology report if they haven't shown it to you.

In 2012 I had an upper GI and they never gave me the path report. I asked for it last year and TBH I will never trust entirely that it wasn't falsified. My husband thinks I'm crazy so I don't push the issue anymore. But I am not convinced. My advice is to get a copy of that report.

Take care,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
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Post by carolm »

Showstoppa,
Wow.....you have healed and are doing better thanks to all the changes you've made and he is asking you to undo it? Why fight success? And if you did have celiac what's the treatment? ..... a gluten free diet. :shock: Wait! you are already gluten free and will need to remain that way to keep your MC from flaring. So I'm wondering what will be gained by you doing this? I can't see that anything will be gained.

I'm with Tex-- Run, don't walk, away from that Dr. For the sake of discussion let's pretend you are diabetic. What he's asking is like a doctor saying 'well now that you have your diabetes under control, I want you to stop your diet restrictions and insulin.... go eat tons of carbs and desserts.... then we'll see if your diabetes will show up again'. Frankly that would be unethical. You doctor is 'nuts' and at the least, insensitive.
Remember, your doctor works for you. You pay him well to provide you a service. I think his request is not reasonable. My 2 cents.

Carol
PS- Eliminating soy made a huge difference for me. If you haven't done, try it. If it's a problem I think you'll know fairly quickly. I improved in a week after eliminating soy. It's a bad for me as gluten.
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showstopa
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Post by showstopa »

Thank you guys for all of the information and support. Sorry for the delayed response. Shortly after i posted i became very ill with constipation and nausea. Maybe it was because of the mere thought of me possibly consuming gluten. :grin:

First and foremost I would like to state that i always learn so much from you guys. My body tends to agree with the boards over any doctor that i have seen so far so thank you guys for that.

Thank you Tex for everything! You are truly a life saver!

Okay where do I start. Okay lets start with the Doctor that I saw and went over my results with. This was my first time meeting him. Apparently my Gastroenterologist operates out of a pool of Doctors. This was the first time that I have seen this guy. Since July of this year I have been seeing the same person until that one day of the results. And I did not get a good feeling from him off jump. First it was obvious that he had not reviewed any of my medical history as I was left having to explain everything from day 1 from four years ago. I am sure you guys know how fustrafrustrating this could have been or could be. I would also like to state that I lost my original doctor who diagnosed me in another state back when I was working and had insurance in October 2010. May 2012 I lost my job and had no insurance and was basically treating myself from home for two years with limited resources. In May of 2014 I was able to take advantage of insurance options for low income people through Obama Care. Thank God for that. I never saw myself as a person who would be in a low income situation but when I lost my job and was sick. I needed this to get better, so this option was right on time. Ever since then I have been working with these Doctors in order to get myself better so that I can get a job and depend on my body again. So that is my backstory with my doctor history.

Tex, again thanks for clearing up that my lymphocyte could not be zero. I asked this doctor specifically what the count was. You guys prepared me to ask this question so I followed instruction and know that i heard him correctly when he said there where none. This was another mistake made by this Doctor. After I came to the boards and Tex informed me that I had to have some count. I looked on the report and could not find it. So I called the nurse and she informed me that it would not be on the report but on a blood test. She provided the count as 2.5. So thanks for that.

As I stated before. My body makes the decisions on how I feel not me or some Dr. My body tends to agree with the boards. No way could it make sense to add more to my diet when i have complications with the restricted diet.
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Post by Lilja »

Hi

Tex: You are so right!

I was told to quit gluten and lactose without being tested first, and I did not have a clue... Now, if I want a diagnosis I would have to eat gluten for 2-3 months to provoqe a reaction. I blame it on my doctors back then, but I don't need a diagnosis, I know that gluten makes me very sick.

Here in Norway you are allowed quite a big sum of money each year from the state, to cover your extra expenses due to the special and expensive food you have to eat. But, the keyhole is very small: You have to get a recommendation from a specialist in gastrointestinal illnesses, (you have to have the gene, a biopsy and a few other things) proving that you have either celiac disease or non-celiac gluten sensitivity. I would love to receive some extra money, but I don't want to eat gluten for 3 months in order to have a "certificate" the authorities can approve of.
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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Post by AnnW »

Hi Showstopa:
Having worked in clinical laboratory medicine for many years, I would be interested in reading the pathololgy report. Because biopsy samples are so small it is possible (but not probable) that in a single sample the leukocyte count could be zero. However, all that means is the leukocyte count in that sample is zero. It could also mean that the pathologist missed it. Unfortunately that is the problem with biopies. They don't show the whole picture, since no one can sample the entire colon. Also, many GI's still believe that MC covers the entire colon and only one sample is needed to diagnose it or see if it is in remission, which is patently false.
Ann
P.S. I agree wholeheartedly with Tex that IBS is simply undiagnosed IBD, Celiac, parasites, food allergies, dysbiosis, or some other yet undiagnosed condition!
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Post by brandy »

Hi Showstopa:

Since I've been diagnosed with MC I've met one African (Ghanian) and one African American who went through h*ll trying to get diagnosed because "African Americans and Africans don't get celiac."

The Ghanian that I met had an interesting story. He and his African American girlfriend were at my local Deli ordering GF. My Gluten intolerance group was meeting at the Deli the same night so we invited the Ghanian and his girlfriend to join the group. Anyways he is a young guy in his 20's. I think he is either a grad student or a professor at the University. He said cassava, maize and rice were the staples of the Ghanian cuisine. He said wheat was available in Ghana but you might only eat it say once every two or three weeks. http://en.wikipedia.org/wiki/Ghanaian_cuisine When he first arrived at the University of Florida from Ghana he loved the American diet. He became deathly ill for two years. Emergency room visits, numerous GI docs etc. He tested negative for celiac. After two years of suffering someone told him to try a gluten free diet. Guess what, he responded and is in remission.

The other person I know is a lady African American engineer. She self diagnosed herself with celiac from the internet. She had all the symptoms. I think she went to four doctors before one would do a celiac blood test on her because she was repeatedly told "African Americans don't get celiac." Guess what. She tested positive for celiac. She has been GF since then and in remission.

There is no doubt that gluten sensitivity and celiac are way under diagnosed in the African American community.

Brandy
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