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Recently In Hospital And Still Confused


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9 replies to this topic

#1 DonnaMM

 
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Posted 16 November 2012 - 09:06 AM

So I have had GI problems for years and it used to be almost uncontrollable diarrhea like 20 times a day I went through celiac testing multiple times. Three blood tests and a EGD showed blunting but negative biopsies, the doctor said I could just have gastritis. Went on the diet anyway and saw improvement then added gluten back and I have had no problems what so ever. Recently I was in the hospital for rapid heart beat (over 250) short of breath (O2 of 88%). Found to also be anemic with a hemoglobin of 10.4 down from 11.8 six days prior. My iron was a little low 23 ( my lab says 25 is normal) with a normal TIBC normal transferrin and low iron saturation and extremely low ferritin of six. The doctor said I have iron deficient anemia due to malabsorption because I am not a vegetarian and my periods are not extremely heavy and I have never had this problem before. I am a little nervous because I have a history of lymphoma and I am not quite convinced about the celiac. I am a nurse and work on an oncology floor and have asked many doctors about the celiac and they too are not convinced but my hospital doctor swears its malabsorption. Anyone else been diagnosed just based on anemia? The problem with this is, I know iron deficiency anemia presents with anemia of chronic disease which can be present in malabsorption diseases as well as cancers. So I just want to know if anyone else has been diagnosed with totally negative results and been told they have it just based on anemia. Mind you my B12, folate and vit D are all normal.
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Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

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#2 Chiana

 
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Posted 16 November 2012 - 09:21 AM

Are you aware that untreated celiac disease has been linked to several types of lymphoma?

If they can not find evidence that your cancer has returned and is directly causing the problem, you certainly have several celiac disease red flags. (Note: Everyone has different deficiencies with this disease. My b12 was very low, but my folate, d and iron were fine.)
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#3 DonnaMM

 
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Posted 16 November 2012 - 09:27 AM

I am aware of the correlation with celiac and lymphoma but it was 7 years ago and my GI troubles didn't start until about a year after treatment. I believe mine was hereditary because my cousin had Hodgkin's lymphoma as well. I am just said cause I feel so socially isolated on this diet but I know I am at risk because I have a autoimmune thyroid condition, an autoimmune clotting condition an I am a danish (a ethnicity with a high rate of celiac disease)
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Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

#4 DonnaMM

 
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Posted 16 November 2012 - 09:28 AM

I guess I should be patient because I need to have an entire hematology and gastroenterology workup to determine any other source of bleeding
  • 0
Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

#5 ravenwoodglass

 
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Posted 16 November 2012 - 04:17 PM

But you didn't have totally negative results. You had blunted villi and you now are having issues with malabsorption and anemia. Your GI issues resolved on the diet. You say you aren't having GI issues after adding gluten back in but there are times when people, especially young people, will go through a honeymoon period for a long time before the GI issues appear again. Do get a full work up but after all your celiac related testing is done and then IMHO get back on the diet.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 Findin my way

 
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Posted 18 November 2012 - 03:44 PM

I am aware of the correlation with celiac and lymphoma but it was 7 years ago and my GI troubles didn't start until about a year after treatment. I believe mine was hereditary because my cousin had Hodgkin's lymphoma as well. I am just said cause I feel so socially isolated on this diet but I know I am at risk because I have a autoimmune thyroid condition, an autoimmune clotting condition an I am a danish (a ethnicity with a high rate of celiac disease)


Hi Donna,

Is the autoimmune clotting condition ITP? If you look around this board you'll find a larger percentage than the general population with this disease. I had it as a teenager myself.

Is the autoimmune thyroid problem Hashimoto's? That's very prevalent in the Celiac community too.

You've mentioned several autoimmune problems. Celiac leads to all kinds of autoimmune issues. Please be careful. You don't want to get worse. Look for a doctor who specializes in Celiac and have him/her look at your test results. I think you might find very different answers than the ones you've been given so far.
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#7 GFinDC

 
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Posted 18 November 2012 - 05:05 PM

Um, you have

1. Villi blunting, a classic celiac symptom.
2. improvement on the gluten-free diet, good chance that means something about gluten is bad for you right?
3. Resumption of symptoms after returning to eating gluten. Not a cooincidence most likely.
4 Probably have malabsorbtion, classic celiac symptom.
5. Hashimoto's Thyroiditis, unfortunately also an associated AI disease among celiac women.
6. Doctors who don't believe you have celaac, pretty much a guarantee you have celiac! :)
6. Danish, and not the kind you get at a donut store.

You may have other symptoms that you aren't thinking about that can be related to celiac also. Like hair loss, menstrual irregularity, nail ridges, stiff joints, swelling in limbs, facial tics or muscle twitches, muscle cramps or pain, pale complexion, unexplained fatigue, anixety, depression, insomnia, confusion, forgetfullness, loss of balance, bags under eyes, ringing in ears, irritability, general distrust of doctors, :) craving for gluteny foods like bread, pizza, beer etc, hayfever or other allergies, susceptible to colds or flu more than other people, or don't get them as often as other people, weight gain or weight loss, eat a lot but not gain weight, or gain weght for no apparent reason, unable to leap tall buildings :), bad breath, skin rashes, irritable teeth/gums, sinus congestion, dry skin on elbows, knees or other areas, sleepy/tired more than normal, gassy, bloated, constipation, or diahrea, awful stomach upset during presidential debates, stomach ulcers, gastritis, throwing up after eating, staying close to a bathroom for reasons other than the wonderful aroma, spare change of clothes in your office for emergencies, fuzzy vision at times, slow healing of cuts or easy brusing, unexplained fainting or low blood pressure, too much aspirin in your medicine cabinet for a heathy person, lots of Pepto Bismol in your med cabinet or purse, migraines, oh well, you get the idea.

You don't need all these symptoms to have celiac, but any of them can be caused by it and more.

Some light reading:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#8 DonnaMM

 
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Posted 18 November 2012 - 06:37 PM

Findin my way.... My clotting condition is lupus anticoagulant which gives me hypercoagulablity. Unfortunately mine with not go away like ITP sometimes does. I also talked with a doctor friend that said iron is absorbed in the duodenum which is were my blunted villi was found. Maybe I should just accept it since every other doctor I have seen thinks that's what I have I just can't seem to convince my GI doctor
  • 0
Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

#9 GottaSki

 
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Posted 18 November 2012 - 06:48 PM

6. Doctors who don't believe you have celaac, pretty much a guarantee you have celiac! :)


Quote of the Month Award should go to Paul :D

Donna - many of us test negative. The villi atrophy with other autoimmune disorders and improved symptoms while gluten free are all strong reasons to remove ALL gluten from your diet.

My daughter was diagnosed Lupus, RA and Fibro as a teen -- I have had severe AI symptoms my entire life -- until I was finally tested for Celiac Disease at 43 none of us even knew what gluten or celiac disease was.

My kids have all removed gluten and have all had some or all of their symptoms resolve - they all have negative blood work and mine was only weakly positive when finally diagnosed by blood along with TOTAL atrophy. Don't wait for your tests to prove you have Celiac Disease. Remove gluten now - the immune responses of this disease can take a very long time to improve, so the sooner the better.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 mushroom

 
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Posted 18 November 2012 - 06:57 PM

With all due respect to any gastroenterologists in the world who deserve it, from what I have seen and heard most of them have very little knowledge about celiac disease, and these are the ones who should have knowledge. They are all really "up" on ulcerative colitis and Crohn's and any other digestive tract disorder you care to name, especially those requiring colonoscopy :P ) but the day the celiac class was taught (if it was?) they played golf or slept after several days of being on duty (giving them the benefit of the doubt here), and what they will read in their out-of-date textbooks is that it is a failure to thrive disease of early childhood.

Like Lisa, regardless of what the testing says, I believe you have it, and should trial gluten free right now before you damage yourself further, or end up like me with psoriatic arthritis which requires an annual continental migration to get treatment for.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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