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Hatbox121

Biopsy negative

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So never had blood tests. Did a repeat(5 yr) colonoscopy after polyps were found on previous colonoscopy(rectal bleeding due to fissure, 8 colon polyps non cancerous, ulcer and few other things). One biopsy taken of terminal ileum due to flattened mucosa. This one showed melanosis coli(rarely take stool softeners and never laxatives-they make me cramp really bad), internal hemmrohids, polyps plus the flattened mucosa of ileum. Results came back today. My new polyps, 3 this time, were all benign and celiac biopsy negative. Was just told to repeat colonoscopy in 3 years. That's all, good day folks. So..... now what? What's causing that flattened mucosa? Nurse couldn't say. Should I ask for the blood work Anyway? Or do you think insurance would deny it now? I am always worried about gut stuff mostly due to nearly dying as a kid(bowel rupture, sepsis, burst "cyst" my mom called it-hospital has destroyed records so I can't get those to see if it was an abcess instead). Have ulcers in stomach(antrum), h.pylori negative. Chronic constipation(go maybe once a week), nausea, vomiting, intermittent diarrhea and cramping, blah blah. My kid is exhibiting similar symptoms as well so I'm doubly anxious to solve this. I'm also chronically low on RBC but nurse said doubtful it's GI related when I asked. Oh and after my colonoscopy he had said if all looked  good we could wait 10 years(putting me at 46), but now hes moved it to 3 years. Can anyone help me with what to do next? 

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Celiac biopsies aren't taken from the terminal ileum they need to be taken from the duodenal bulb and 3rd portion of the duodenum.  Which is reached by an upper scope not colonoscopy.  If your GI believes he adequately ruled out celiac I'd find a new GI who knows what he/she is doing.

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Thanks. He noticed the flattened mucosa during my colonoscopy so that's why he decided to check. I had a EGD two years ago but no biopsies for that. 

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Just got a call from nurse. Dr will do blood work. Anemia panel, CBC, and Celiac Panel, Antigliadin Abs, and Human ttg. That's what in my file as ordered. Will go tomorrow to do those. Are those the right ones? No idea what celiac panel means, just what's listed in there.

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The full celiac panel is:

TTG IGA

TTG IGG

DGP IGA

DGP IGG

EMA

IGA

in the US.

You only need a positive on one to have them do an endoscopy to verify celiac. There are people here that only failed one test and have celiac.

 

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2 hours ago, Hatbox121 said:

So never had blood tests. Did a repeat(5 yr) colonoscopy after polyps were found on previous colonoscopy(rectal bleeding due to fissure, 8 colon polyps non cancerous, ulcer and few other things). One biopsy taken of terminal ileum due to flattened mucosa. This one showed melanosis coli(rarely take stool softeners and never laxatives-they make me cramp really bad), internal hemmrohids, polyps plus the flattened mucosa of ileum. Results came back today. My new polyps, 3 this time, were all benign and celiac biopsy negative. Was just told to repeat colonoscopy in 3 years. That's all, good day folks. So..... now what? What's causing that flattened mucosa? Nurse couldn't say. Should I ask for the blood work Anyway? Or do you think insurance would deny it now? I am always worried about gut stuff mostly due to nearly dying as a kid(bowel rupture, sepsis, burst "cyst" my mom called it-hospital has destroyed records so I can't get those to see if it was an abcess instead). Have ulcers in stomach(antrum), h.pylori negative. Chronic constipation(go maybe once a week), nausea, vomiting, intermittent diarrhea and cramping, blah blah. My kid is exhibiting similar symptoms as well so I'm doubly anxious to solve this. I'm also chronically low on RBC but nurse said doubtful it's GI related when I asked. Oh and after my colonoscopy he had said if all looked  good we could wait 10 years(putting me at 46), but now hes moved it to 3 years. Can anyone help me with what to do next? 

Yeah the once a week constipation and random D, nausea, vomiting almost every meal?, do you find yourself sleeping alot and no amount of energy drinks help for long periods of time? Sound a bit like me 5 years ago. I would see about getting the FULL blood test and ENDOSCOPE with biopsy. PS Magnesium Citrate from Natural Vitality called Calm will work bloody wonders for that constipation. Start off with 1/4tsp work up your dose taking 2-3 time a day til you get looser stools and at least a bowl movement a day. I have magnesium absorption issues still and take a very large dose along with another magnesium. Another question have odd issues like no dreams, sometimes tingling loss of feeling in the hands and feet or odd coordination issues?

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1 hour ago, PinkyGurl said:

Celiac biopsies aren't taken from the terminal ileum they need to be taken from the duodenal bulb and 3rd portion of the duodenum.  Which is reached by an upper scope not colonoscopy.  If your GI believes he adequately ruled out celiac I'd find a new GI who knows what he/she is doing.

Although not common, a GI can obtain biopsies of the small intestine via colonoscopy.  

http://www.cureceliacdisease.org/faq/is-a-colonoscopy-better-than-an-endoscopy-for-taking-a-biopsy-of-the-small-intestine/

Glad Hatbox is getting the celiac panel.  She should be sure to keep eating gluten.  In as little as two weeks, the blood test can become invalid if gluten is removed from the diet.  

 

Edited by cyclinglady

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1 hour ago, Ennis_TX said:

Yeah the once a week constipation and random D, nausea, vomiting almost every meal?, do you find yourself sleeping alot and no amount of energy drinks help for long periods of time? Sound a bit like me 5 years ago. I would see about getting the FULL blood test and ENDOSCOPE with biopsy. PS Magnesium Citrate from Natural Vitality called Calm will work bloody wonders for that constipation. Start off with 1/4tsp work up your dose taking 2-3 time a day til you get looser stools and at least a bowl movement a day. I have magnesium absorption issues still and take a very large dose along with another magnesium. Another question have odd issues like no dreams, sometimes tingling loss of feeling in the hands and feet or odd coordination issues?

Yes to the sleep. I was diagnosed with idiopathic hypersomnia after a sleep study with a MSLT. Can't do energy drinks as i have another issue that causes tachycardia. I do not dream, ever. And yes I am diagnised with polyperiphrial neuropathy of unknown origin plus patches of skin that has no feeling. I often lose grip on stuff, have terrible perioperspection, and am clumsy. Also have other health issues though so it gets confusing. Ehlers  Danlos syndrome is my big one.

Does the mag citrate cause Melanosis coli? Doesn't matter much but am curious.

I had an endoscope in 2015 but celiac wasn't even on the radar then. So only biopsy was to check for h.pylori after they found several ulcers in the antrum part of stomach. 

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42 minutes ago, cyclinglady said:

 

Glad Hatbox is getting the celiac panel.  She should be sure to keep eating gluten.  In as little as two weeks, the blood test can become invalid if gluten is removed from the diet.  

 

I read that. I'm going to do the blood work tomorrow, but will keep my current diet(what little there is) until all is said and done. Just in case. 

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2 minutes ago, Hatbox121 said:

Yes to the sleep. I was diagnosed with idiopathic hypersomnia after a sleep study with a MSLT. Can't do energy drinks as i have another issue that causes tachycardia. I do not dream, ever. And yes I am diagnised with polyperiphrial neuropathy of unknown origin plus patches of skin that has no feeling. I often lose grip on stuff, have terrible perioperspection, and am clumsy. Also have other health issues though so it gets confusing. Rulers Danlos syndrome is my big one.

Does the mag citrate cause Melanosis coli? Doesn't matter much but am curious.

I had an endoscope in 2015 but celiac wasn't even on the radar then. So only biopsy was to check for h.pylori after they found several ulcers in the antrum part of stomach. 

Unsure but that is why I use it on rotation with Magnesium Glycinate from Doctors Best, Not healthy to use the citrate all the time despite it being much more effective. I sometimes might go a few days without and change over to a softer foods diet of blended meals to keep it easy on my gut. TRUST me you will find magnesium to be a bloody life changer with your nerve, and stomach issues, it helps a bit with sleep but I am willing to bet the majority of that, the bloating, vomiting etc comes from celiac which you will figure out after the test I imagine, Even if you test negative I am going to say after it go ahead and drop gluten you might be NCGS and have issues with it anyway.

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Just to keep this going in case someone later on is in a similar situation-

I did my bloodwork today. I don't have all of it back yet of course but do have some. My RBC is normal for the first time in over 13 years. It's the lowest number that normal can be on the ref range. My transferitin and TIBC are both low. Iron level is normal. MCH is high. My IGA total is 132(normal). As a side note, last month my monocytes were high. And last year, my amylase and lipase were both low(which I was told was of no consequence) although I'm reading now that can be found in celiacs and other issues. A couple of years ago my last check on prealbumin was very low. Will update as i get more info in. 

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8 hours ago, Hatbox121 said:

Just to keep this going in case someone later on is in a similar situation-

I did my bloodwork today. I don't have all of it back yet of course but do have some. My RBC is normal for the first time in over 13 years. It's the lowest number that normal can be on the ref range. My transferitin and TIBC are both low. Iron level is normal. MCH is high. My IGA total is 132(normal). As a side note, last month my monocytes were high. And last year, my amylase and lipase were both low(which I was told was of no consequence) although I'm reading now that can be found in celiacs and other issues. A couple of years ago my last check on prealbumin was very low. Will update as i get more info in. 

From your transferritin and TIBC range, combined with normal iron level, sounds like out of three stages, you may have first or second stage iron deficiency.

Regarding the MCH, macrocytic RBCs are large so tend to have a higher MCH.

High MCH levels can indicate macrocytic anemia, which can be caused by insufficient vitamin B12. Insufficient folic acid can be another cause of macrocytic anemia.

Alcohol abuse can be a contributing factor and should be disclosed in the diagnostic process to better enable accuracy in diagnosis and in treatment determination.

http://www.brighthub.com/science/medical/articles/71162.aspx

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6 hours ago, plumbago said:

From your transferritin and TIBC range, combined with normal iron level, sounds like out of three stages, you may have first or second stage iron deficiency.

Regarding the MCH, macrocytic RBCs are large so tend to have a higher MCH.

High MCH levels can indicate macrocytic anemia, which can be caused by insufficient vitamin B12. Insufficient folic acid can be another cause of macrocytic anemia.

Alcohol abuse can be a contributing factor and should be disclosed in the diagnostic process to better enable accuracy in diagnosis and in treatment determination.

http://www.brighthub.com/science/medical/articles/71162.aspx

I do not partake in alcohol so that is not a factor. I will add that 5 years ago I had a MRI of my hip which revealed an incidental finding. I was rushed over to oncology to rule out cancer in my femur. I had a MRI 6 months later which revealed a stable area in my bone marrow. In the end the oncologist ruled it either an infarct or fibrous dysplasia and I was told to come back if my femur broke. I was released and it was not followed after that. My sternum was also noted to be deteriorating which is another area of bone marrow in the body. 

In iron deficiency anemia, isn't the TIBC typically higher in the second stage as the body starts preparing to take any iron as it comes in? 

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2 hours ago, Hatbox121 said:

I do not partake in alcohol so that is not a factor. I will add that 5 years ago I had a MRI of my hip which revealed an incidental finding. I was rushed over to oncology to rule out cancer in my femur. I had a MRI 6 months later which revealed a stable area in my bone marrow. In the end the oncologist ruled it either an infarct or fibrous dysplasia and I was told to come back if my femur broke. I was released and it was not followed after that. My sternum was also noted to be deteriorating which is another area of bone marrow in the body. 

In iron deficiency anemia, isn't the TIBC typically higher in the second stage as the body starts preparing to take any iron as it comes in? 

I think your thinking/concept is basically correct (but I am not a hematology expert). BTW, Merck says there are five (not three) stages of anemia, and states:

"Stage 1 is characterized by decreased bone marrow iron stores; Hb and serum iron remain normal, but serum ferritin level falls to < 20 ng/mL. The compensatory increase in iron absorption causes an increase in iron-binding capacity (transferrin level)."

http://www.merckmanuals.com/professional/hematology-and-oncology/anemias-caused-by-deficient-erythropoiesis/iron-deficiency-anemia

ETA: Contradicting myself above, yes, you are correct (and maybe I did not read too closely earlier).  "isn't the TIBC typically higher in the second stage as the body starts preparing to take any iron as it comes in?" And yours was low, not high.

 

 

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Blood work in so far-

Tissue Transglutaminase IgA Ab

7/18/17
<2 U/mL
Comment:
Negative 0 - 3
Weak Positive 4 - 10
Positive >10
 
Tissue Transglutaminase IgG Ab
Reference Range:
0-5 U/mL
<2 U/mL 
 
Gliadin (Deamidated) IgA Antibody
Reference Range:
0-19 units
Results
07/18/17
4 units
Comment:
Test Name: Deamidated Gliadin IgA Antibodies
Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30
 
 
Gliadin (Deamidated) IgG Antibody
Reference Range:
0-19 units
Results
07/18/17
2 units
 

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Did you get any of your vitamin and mineral levels checked for deficiencies?  You don't have to be Celiac to develop deficiencies.  

Peripheral neuropathy may be caused by deficiencies of B12, copper, vitamin E, B6, B1

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/

Not dreaming can be caused by B6 deficiency.

https://www.ncbi.nlm.nih.gov/pubmed/11883552

Tachycardia may be caused by deficiencies of B1, B12, vitamin C

http://www.livestrong.com/article/503879-vitamin-deficiencies-racing-heart/

Ehlers Danlos can be helped by calcium, magnesium, vitamin C, and others

https://www.ncbi.nlm.nih.gov/pubmed/15607555

And that funky color of your colon, melanomas coli, vitamin E deficiency

https://www.researchgate.net/publication/22087649_Ceroid_enteropathy_and_vitamin_E_deficiency

IMHO, doctors would rather treat the symptoms than cure the real problems.

Hope this helps.

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6 hours ago, knitty kitty said:

Did you get any of your vitamin and mineral levels checked for deficiencies?  You don't have to be Celiac to develop deficiencies.  

Peripheral neuropathy may be caused by deficiencies of B12, copper, vitamin E, B6, B1

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/

Not dreaming can be caused by B6 deficiency.

https://www.ncbi.nlm.nih.gov/pubmed/11883552

Tachycardia may be caused by deficiencies of B1, B12, vitamin C

http://www.livestrong.com/article/503879-vitamin-deficiencies-racing-heart/

Ehlers Danlos can be helped by calcium, magnesium, vitamin C, and others

https://www.ncbi.nlm.nih.gov/pubmed/15607555

And that funky color of your colon, melanomas coli, vitamin E deficiency

https://www.researchgate.net/publication/22087649_Ceroid_enteropathy_and_vitamin_E_deficiency

IMHO, doctors would rather treat the symptoms than cure the real problems.

Hope this helps.

Last check(last fall sometime) my b12 and folate were fine. He did check my iron and it was fine. My potassium is technically normal, but lower than my cardio wants(I'm on q med that depletes it). Last time I had a full and extensive panel run was years and years ago. I recall my copper being high(but no one ever retested it), vit d and a couple others were low. I have tested positive for labs used to evaluate malnutrition, but it's been q couple of years since they've done those. Just going to put it on the back burner for now I guess. Can't afford to lose much more weight, but they tend to get more serious the lower my BMI goes(not on purpose, I'll have periods where I can gain a bit because I'm not vomiting a lot. Past two days I've been throwing up again after I eat.) Maybe my next colonoscopy will finally show something useful.  It's just 3 years this time and I've been arguing about my gut for 18 years now so what's a little More? 

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Did you take any vitamin D supplements when that tested low? Was anything done to correct the other deficiencies you had?  Do you take a multivitamin now? 

I think correcting any vitamin and mineral deficiencies should be the first line of defense.   It's the simplest way of ruling out more sinister conditions. 

Vitamin deficiency diseases can be mistaken for other diseases.  For example,  a deficiency in niacin (pellagra) can be mistaken for Celiac Disease.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

Cycling Lady broke vertebra in her neck throwing up.  She had anemia, a result of iron and B12 deficiencies.  

I understand how you can just blow off the importance having adequate vitamin and mineral levels.  I did.  My doctor did, too.  And I've paid the consequences.

Please rethink putting nutritional deficiencies on the back burner.

Hope this helps. ?

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I'd try the gluten free diet for a few months to see if that helps at all. Can't hurt. If it doesn't help I'd try a low FODMAP meat and veggies diet.

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