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Member Since 18 Dec 2007
Offline Last Active Nov 28 2012 02:51 PM

Topics I've Started

gluten-free Almost A Year Now Anemic

21 November 2012 - 07:04 AM

Edited to add....I shouldn't have said Anemic but I can't edit the post topic . I haven't been told I am Anemic...just have low iron.

It's been so long since I've visited here. Life's been busy. I have been gluten free since last December. I had my biopsy and bloodtest and both negative for celiac. I'm not concerned about that because I do know gluten bothers me. Last December my ferritin was 9 (everything else looked normal) and if I hadn't asked about if I should do anything about it the dr wouldn't have even thought twice about it. She told me to take a multivitamin with iron. Well, that made me nauseous so I just stopped taking it. Over the past year I felt my diet has been healthy. I've been getting more headaches again and my hair seemed to be everywhere (falliing out) and I just haven't had much modivation or energy. So I went to the dr's last week to check my iron again. This time my ferritin is 8 and my iron saturation numbers are low now. Last year my iron was 128 (normal value is 50-170) last week it was 40. My iron saturation last year was 33% (normal range is 15-50) last week it was 10. So this could be why I'm feeling the way I do. The dr put me on iron supplements and wants to retest in a month.

So my question is. The one thing I haven't looked into with going gluten free is my makeup. My friend told me to get rid of it all and only go with gluten free. Would this really make that much of a difference? I just can't see that affecting my iron...but could it? Or is it because I'm not eating all the fortified breads and cereals anymore?

My Daughter's Celiac Testing Was Negative...but Allergy Testing +

13 January 2012 - 06:02 AM

She had her biopsy last month and it was negative. However she was diagnosed with eosiniphilic esophagitus. I went ahead and had her get allergy testing yesterday and she was positive to wheat, barley and rye...along with peanuts, hazelnuts, cashews, corn, soy, sunflower and a few others. So since she knows "gluten" has bothered her she will be staying away from that. She's also had a reaction to nutella the last two times she's ingested it...she's staying away from it. The allergist figured it would be best to stay away from wheat, soy and sunflower (thinking those must have been the highest on her reaction). At least she has a medical reason to stay away from those things now. I will be calling her college to see if we can schedule a dietitian appointment to make sure she is finding foods in the cafeteria that she can eat. If she has a hard time we will push for her to get out of the meal plan and possibly dorm for next year.

Still happy our household is gluten free now. My other kids and myself are feeling so much better despite the negative biopsies.

edited to to add...I meant to post this in the kids section...but oh well. :P

All The Biopsies Were Negative ....still Going Gluten Free

22 December 2011 - 07:37 PM

I guess I knew we'd still do the gluten free house no matter what. I know each of us feels better gluten free so we'll just move on. My 12 yr old's esophagus was slightly irritated...but I don't think the nurse mentioned the dr wanting to do anything for that. My 10 yr old looked clear but because he has so many stomach complaints the dr prescribed an antacid. My 19 yr old daughter had pretty extensive Eosinophilic esophagitis. So the biopsy confirmed what the irritation the dr saw was. She also has a hiatal hernia which I'm sure doesn't help that either. The EE makes us realize what she has had problems with over the past 7-8 yrs with reactions to things. Her chest used to hurt so extremely bad I'd almost be bringing her to the ER.

So the plan with her is to eat gluten free while home on Winter break from her college. Get her healthy and then hope that she can make some good choices with her food when she goes back. I think I will call up the college and have her meet with the nutrionist there...as I think they did have someone available. She's been very fatigued so my worry is she'll get herself feeling good again and because she doesn't have that celiac diagnosis the college won't do anything to help her with her eating plan.

Ah..I know nobody wants the diagnosis of celiac...but it would explain so much. My 12 yr old son's blood work was positive and his muscle pain went away gluten free so something must be going on. My husband has to avoid gluten or he gets severely ill.

The dr recommended genetic testing now. Is there any difference between getting the genetic blood test vs the swab of the mouth. I think our insurance pays 50% for a genetic blood test which would put us having to pay about $550...vs doing it on our own I think it was $300 for the saliva test through promitheus labs.

My Daughter Had Her Endoscopy....dr Prescribed Nexium

20 December 2011 - 04:40 PM

She is 19 but the celiac specialist pediatric gi dr my boys see said he would do her endoscopy as well. So it was done this afternoon. We have to wait a week for the results of the biopsies. However, he saw "extensive irritation to her esophagus" and she has a hiatal hernia. He said the esophagus irritation is often seen in someone with food allergies. Anyway, he put her on nexium.

I've often noticed here on the forum people talking about esophagus disorders...is this something common with celiac. I can tell you that my husband had severe acid indigestion and it was the first symptom to go away after giving up gluten 2 yrs ago. His diarrhea took 5 to 6 months to clear completely though.

12 Yr Old Has Stomach Pain Today...day After Endoscopy.

17 December 2011 - 09:00 AM

Is this normal? He says it's pain he's never had before. Not that it's severe but it's a different pain. He said it kind of comes and goes...but like comes...gets bad for a second and then slowly fades away.

Should I be concerned about something related to the endoscopy he had yesterday morning?

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