Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lots Of Symptoms

Bigsis

Recommended Posts

Bigsis Newbie
Bigsis
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Bigsis Newbie
Bigsis
Posted
  • Author

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,636
    • Most Online (within 30 mins)
      7,748
    Elaine Rhoda
    Newest Member
    Elaine Rhoda
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.