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Old 05-11-2013, 12:03 PM   #1
Join Date: May 2013
Location: Minnesota
Posts: 8
LilGirl536 HB User
Doctors say negative but have been GF for 6 months

I have been gluten free for just over 6 months, and am still having horrible stomach issues/extremely low iron, fatigue, etc. In march they did some celiac blood tests, but I went GF in december, they said all were negative. Could this be bc of my diet? I just had iron/cbc redone.

IGA: 269 (70-380)
Tissue Transglutaminase aby IGA: <1.0 interpretation negative (0-3.9)
Tissue transglutaminase aby IGG: 1.5 (0-5.9)
Ferritin: 14 (10-120)
CRP: <5 (0-8)
SED: 2 (0-20)
Magnesium: 2 (1.6-2.3)
T4 Free: 1.15 (.7-1.85)

RBC: 5.12 (march) 4.45 (may) (3.8-5.2)
WBC: 8.3 (march) 9.4 (may) (4-11)
Hemoglobin: 14.5 (march) 12.1 (may) (11.7-15.7)
Hematocrit: 42.1 (march) 37.4 (may) (35-47)
Platelets: 325 (march) 306 (may) (150-450)
Calcium: 9.4 (march) 8.8 (may) (8.5-10.4)
BUN: 8 (march) 12 (may) (5-24)
TSH: 0.88 (march) 0.96 (may) (0.4-5)
Iron: 24 (march) 23 (may) (35-180)
Iron Binding Cap: 381 (march) 393 (may) (240-430)
Iron Sat Index: 6% (march) 6% (may) (15%-46%)

I don't know if any of that is useful. I'm just confused as to if I should stop being gluten free, since the tests are negative, but my mother has celiacs, and while the stomach aches have decreased, I still can't gain weight and still have a lot of symptoms.

Thanks for any help!

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Old 05-11-2013, 02:14 PM   #2
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Re: Doctors say negative but have been GF for 6 months

Many people have gluten intolerance without outright celiac disease. If the diet has improved your symptoms, I would stick with it. Many gluten sensitive individuals are also sensitive to milk and dairy products. This can be a lactose (milk sugar) problem or a milk protein allergy (whey, caseine). I would try eliminating all dairy for awhile and see how you feel. The iron can be supplemented. Almond, rice, soy, and cocunut milk are all good alternatives to cow's milk. Sorbetto is good instead of ice cream. You can make it work if it seems to help the GI symptoms.

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Old 06-06-2013, 10:06 AM   #3
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Location: Southeast US
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hypohyperwhacko HB Userhypohyperwhacko HB User
Re: Doctors say negative but have been GF for 6 months

Hi. I just wanted to share that you can have Celiac disease even with negative bloodwork & a negative biopsy if you have been on a gluten free diet for a long period of time. The only way to know for sure is to re-introduce gluten into your diet & be tested again. The question is, is it worth it for a diagnosis? If the gluten free diet is helping somewhat, I'd say stick with it. My child has Celiac's and, despite a gluten free diet, he still can't gain weight. Our Gastro explained that people with Celiac often have absorbtion problems even once a gluten free diet is followed. Hope this helps some.

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