Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Lots Of Symptoms
0

3 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,641
    • Total Posts
      921,552
  • Topics

  • Posts

    • Hi Kasia2016, Yes, celiac disease symptoms can vary widely.  Some people have no symptoms, we call that silent celiac.  Other have difficulty walking (gluten ataxia), skin rashes (dermatitis herpetiformis), and thyroid disease (Hashimoto's thyroiditis).  The list goes on and on.  GI symptoms can vary widely too, from mild symptoms at times to severe symptoms.
    • Hi egs1707, Welcome to the forum! Irene is right, you should not be gluten-free until all testing is completed.  The celiac disease tests are checking for immune system reactions and damage, and when you go gluten-free that starts to decline.  So the tests may not show the true immune reaction that is going on or the normal damage.  They may not show any damage in fact and you could get a false negative diagnosis.  You body starts healing and out the window go the test results.  Your doctor gets an "F" grade if they told you to go gluten-free now. But you aren't alone in having a doctor who doesn't understand the celiac disease testing process.  Many of them are woefully ignorant of proper testing for celiac disease.  That why the current estimate is somewhere in the range of 85% of celiacs in the USA are undiagnosed.  It doesn't help when doctors screw up the testing themselves.  Or refuse to test people.  Which is also far too common. I was vegetarian for 5 years.  I am not anymore and don't recommend it.  It is hard enough living gluten-free and finding safe food to eat and adequate nutrition for healing a damaged body.  I used to eat a lot of soy products when I Was vegetarian, but now soy makes me physically sick.  We can sometimes develop reactions to foods we eat a lot of while our guts are inflamed IMHO.  Soy is not a healthy food anyway from my reading. I can't do dairy now but may people who start out lactose intolerant end up being able to eat dairy after they have recovered. The best advice I can give is to avoid as much processed food as you can, and eat mostly whole foods you cook yourself at home.  When you do cook, cook big, and freeze the leftovers.  That way you can quickly take a small portion of food out of the freezer and reheat it.  Being celiac it is more important to learn how to cook.  Unless you are wealthy all those gluten-free processed foods add up quick.  Plus gluten-free processed foods often are lacking in fiber and vitamins. You'll want to watch out for vitamin deficiencies also.  Since celiac disease damages the villi in the small intestine, the vitamins and minerals etc are not digested and absorbed well.  So celiacs can be low on vitamin D, calcium,  and one other one I forget.  Vitamin B-12 may be low also ( it is important for nerve health).  Then there are some vitamins that vegetarians tend to have problems getting enough of also to consider. Adjusting to living with celiac disease means adjusting to a new diet and some lifestyle changes.  There's lots of us that make that change every year though, it's not impossible.  You will most likely end up eating better, more nutritious food than many of your peers.  And you will avoid a pletora of additional health concerns that can come along with untreated celiac disease. Learning to cook can be an adventure and you may enjoy it once you start.  you may find your taste in foods changes once you have been gluten-free for a while too. Recovery from celiac disease can take some months.  The immune system is very serious about protecting us and doesn't give up quickly.  Also it always remembers so it will react to even small amounts of gluten.  I live with gluten eaters at home and I do fine.  I just am careful about rinsing dishes off and so forth before using them. There is a Newbie 101 thread at the top of the coping with forum subsection.  It may provide some helpful info.  
    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • Pastry chain goes gluten-free, using mangoes ... But gluten is also believed to cause celiac disease, non-celiac gluten sensitivity, and wheat allergy, ... View the full article
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,644
    • Most Online
      3,093

    Newest Member
    Jross69
    Joined