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Lots Of Symptoms


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#1 Bigsis

 
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Posted 19 October 2011 - 10:33 AM

Hello,
I have a daughter that is 30 years old(diagnosed at 10 months with celiac disease)that has been gluten free most of her life. I had totally normal blood counts in October 2011(no anemia) in pretesting for an orthopedic surgery. Now I have microcytic anemia(no menstruation since Feb 2011-55 yrs old) and have been very symptomatic. I noticed increased shortness of breath with walking and elevations last winter.By coincidence, I did start a gluten free diet in January after cooking a meal for a coworker....I felt better so I thought why not? I have been more forgetful in the past year but was attributing it to hormone/menopause. I sometimes feel hypoglycemic...but the blood sugars are normal according to my family doctor/HA1C still normal also. My cholesterol and triglycerides have come down (familial hypercholesterolemia) on the gluten free diet. In mid September, I had a few "episodes". First time I thought maybe I was dehydrated....was feeling a bit wary of making mistakes at work...so I drank fluids and ate lunch. I had been lightheaded, unsteady even with feet planted and standing, tingly hands and head/lips and I couldn't sort thoughts. The second time I was working in a different medical facility and had to get help with a study(ultrasound)...I walked back into office and burst into tears. I had bad headache ,lightheaded, felt unsafe doing my job, shortness of breath. The coworkers checked my blood pressure...I am hypertensive and on meds....b/p was ok. I hydrated and sat in quiet room...didn't want to go to er. (had forgotten b/p pill in am). I took a b/p when I got home at 7 pm. At midnight- I felt like heart was beating out of chest,short of breath, tingly hands,lightheaded..etc lasting a half hour. I saw my new doctor lol (cardiologist) and family doctor the next week. Echo ok, ekg ok, stress test on hold. All bloodwork normal except hct 30.7,hgb 9.9,mcv 74, mch 23.9,rdw and platelets just slight elevation. All big drops for me. Had furthur bloodwork - fe/tibc 14/560, iron sat 3. I have leg cramping now too on top of the neuro/cardiac symptoms.
Upper endoscope and colonoscopy next week with biopsy also(he wants to see if small intestine looks inflamed..maybe celiac) I have large hyatal hernia and take a proton pump inhibitor(decreases stomach acid) as well as exercise induced asthma and arthritis(on ansaids). They won't let me take iron until all testing done. B12 normal.
A friend called last night and said that she read somewhere that following a gluten free diet if not a true celiac sprue can cause iron deficiency anemia. My doctors say the opposite. Is that accurate?
I am sorry the post is long. Thank you for any input. Bigsis917

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#2 ravenwoodglass

 
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Posted 19 October 2011 - 10:51 AM

Hello,
Upper endoscope and colonoscopy next week with biopsy also(he wants to see if small intestine looks inflamed..maybe celiac) I have large hyatal hernia and take a proton pump inhibitor(decreases stomach acid) as well as exercise induced asthma and arthritis(on ansaids). They won't let me take iron until all testing done. B12 normal.
A friend called last night and said that she read somewhere that following a gluten free diet if not a true celiac sprue can cause iron deficiency anemia. My doctors say the opposite. Is that accurate?
I am sorry the post is long. Thank you for any input. Bigsis917

First off your friend is flat out wrong.
If you have been gluten free then the endo is unlikely to positive. We do need to be on a full gluten diet and if you have been gluten free for any length of time then you would need to do a gluten challenge for around 3 months.
Have you had the celiac panel done, hopefully before you went gluten free? Celiac is strongly genetic and many of us have a trigger for it. For you that may have been the surgery.
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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)

#3 Bigsis

 
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Posted 19 October 2011 - 11:19 AM

First off your friend is flat out wrong.
If you have been gluten free then the endo is unlikely to positive. We do need to be on a full gluten diet and if you have been gluten free for any length of time then you would need to do a gluten challenge for around 3 months.
Have you had the celiac panel done, hopefully before you went gluten free? Celiac is strongly genetic and many of us have a trigger for it. For you that may have been the surgery.


Thank you for replying quickly. I had never had celiac panel done......never realized there could be a trigger although that makes sense. I talked with the gastro and told him that my daughter has negative endoscopies now as she has been gluten free for so long. He is thinking there might be some irritation or inflammation that might show up. He also is looking for microscopic bleeds etc. (Alot of my gas issues and "blow outs" cleared up with the gluten free diet) The symptoms from the anemia scared me enough to cal the physicians...otherwise I may have not called(typical nurse) Thank you for fast reply . Bigsis917
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