• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

At A Loss...any Ideas?
0

Rate this topic

17 posts in this topic

Recommended Posts

I have been gluten free, along with my whole family, for 14 months now. After going gluten free my nightly horrible stomach pains and D stopped, but a few things got worse and some new symptoms popped up. It is getting to the point that my husband and I cannot live like this anymore, he works all day and still has to come home and do everything. I went to a new doctor a few weeks ago who ran some bloodwork (metabolic panel, CBC, A1C and TSH) everything came back normal and since I don't have insurance I can't just get random bloodwork done and he really wants me on a generic Paxil which I really don't want to take because I have had problems with SSRI meds before.

Symptoms:

Dizziness (can't even stand up for long periods of time)

Lightheadedness (pretty much constant)

Low blood pressure (every time I check it it is around 85/50)

Anxiety (social and agoraphobia)

Depression (this is not a new one for me)

Extreme fatigue (I am tired all the time no matter how much or little I sleep)

Flucuating blood sugar (mostly hypoglycemic with removal of sugar except occasional honey and most fruit)

Constipation (but will get D every once in a while)

Always cold (even when it was 80 degrees here I was cold)

Hair falling out

Terrible time of the month (bad cramps and heavy bleeding 2-3 weeks at a time)

Headaches (at least 3 times a week, mostly behind my eyes and they make me nauseous)

Soreness/ weakness (pretty much my whole body)

Brain fog (trouble concentrating, like I have fluff in my head)

Bloody nose at least once a week

Always thirsty

No sex drive

Acne

Occasional very short temper (at least once or twice a week)

What I eat now:

Chicken

Beef

Pork

Jones Sausage (in the tube maybe once a week)

Butterball Turkey Bacon (maybe once or twice a month)

Carolina White Rice

Annie Chun's Pad Thai Rice Noodles

Baby Carrots

White Potatoes

Green Beans

Broccoli

Cauliflower

Occasionally Cabbage

Synder's White Corn Chips (we buy a bag maybe once every 2 months)

Bertolli or Carapelli Extra Virgin Olive Oil

Garlic, Minced Onions, Black Pepper, Rosemary, Cumin, Cinnamon, Vanilla (All McCormick or Tone's brand)

Morton's Iodized Salt

Namaste Pancake and Waffle Mix

Blue Diamond Almonds

Almond Breeze Vanilla (I only have it when it is baked goods)

eggs

Nuts.com Almond Flour

Wesson Canola Oil (only in baked goods)

Fresh Basil that I grow

Fresh Tomatoes

Celery

occasionally use Hunt's crushed tomatoes with basil to make homemade sauce

Kraft or Sargento cheddar or mozzarella cheese

Tinkyada lasagna noodles (once every few months)

Skippy Natural Peanut Butter Creamy version

sometimes have Lindt 90% dark chocolate

honey (in baked goods)

fruit that I eat only about 2-3 times a month (to help control sugar issues) blueberries, strawberries and banana

I don't know if it could be another food intolerance or what it could be. I can't just randomly cut things out of my diet right now since I have trouble reaching 1200 calories as it is. So if anyone has ANY ideas or suggestions please let me know. Thank you!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Unfortunately, I don't have any ideas, but just wanted to tell you I'm dealing with similar problems. I haven't been able to return to work, it's ridiculous :angry: Have you had your TTG retested or another biopsy? My TTG is still through the roof, so everyone thinks I MUST be getting gluten somewhere, but I (like you appear to be) am VERY VERY careful! My GI has no idea and has never seen someone's TTG stay over 200 for so long while on a gluten-free diet. So, as I said, I don't have any answers, I just feel your frustration, as I'm sure people will also tell you "you must be getting gluten somewhere" :(

Share this post


Link to post
Share on other sites

Unfortunately, I don't have any ideas, but just wanted to tell you I'm dealing with similar problems. I haven't been able to return to work, it's ridiculous :angry: Have you had your TTG retested or another biopsy? My TTG is still through the roof, so everyone thinks I MUST be getting gluten somewhere, but I (like you appear to be) am VERY VERY careful! My GI has no idea and has never seen someone's TTG stay over 200 for so long while on a gluten-free diet. So, as I said, I don't have any answers, I just feel your frustration, as I'm sure people will also tell you "you must be getting gluten somewhere" :(

I never had any testing done so I have no clue :( Our group of doctors diagnosed my daughters and I on resolution of symptoms and never mentioned anything about testing. I didn't know any specifics about testing until I joined this forum after going gluten free.

I really hope that you get to the bottom of your symptoms too, it is incredibly frustrating.

Share this post


Link to post
Share on other sites

Could be your thyroid. I have a lot of the same symptoms. Just because THEY say your TSH is normal doesn't mean squat to me anymore. Most drs aren't even looking at the new levels that have been set. What was your TSH?

Share this post


Link to post
Share on other sites

Could be your thyroid. I have a lot of the same symptoms. Just because THEY say your TSH is normal doesn't mean squat to me anymore. Most drs aren't even looking at the new levels that have been set. What was your TSH?

It was 1.34. I was shocked that it was normal because even the doc said it was a textbook case of hypothyroid.

Share this post


Link to post
Share on other sites
Ads by Google:


Did they run free t3/t4? What about Hashimotos antibodies TPO Ab?

Sometimes the free levels show something is up.

If you have antibodies that's a hint too.

If the doc thinks its thyroid why not ask to try thyroid meds and see? Some docs do that and patients get results. Tsh is a crappy measure of how you feel.

Share this post


Link to post
Share on other sites


Ads by Google:


Did they run free t3/t4? What about Hashimotos antibodies TPO Ab?

Sometimes the free levels show something is up.

If you have antibodies that's a hint too.

If the doc thinks its thyroid why not ask to try thyroid meds and see? Some docs do that and patients get results. Tsh is a crappy measure of how you feel.

No they only ran the TSH. I am going to have to make an appointment and I will ask him about those tests.

Share this post


Link to post
Share on other sites

I could have written that post, except I was not gluten free and I had a full body rash. The allergist ran a TPO (Thyroid Antibody) test and it came back elevated, my T3/T4 and TSH were all within normal. Kicker is TPO was only 60 and anything under 30 is normal, so although I thought it was aweful, that is very low, my son just tested at 427. Gluten free diet helped some symptoms but a lot of them didn't get better, after a little negotation with they Endo he placed me on a very low level of Synthroid and all those symptoms are gone.

Share this post


Link to post
Share on other sites

What about POTS? If you can't stand long enough, this can be it. I have it. I also have some type of autonomic dysfunction when parasympathetic nervous system is somehow damaged.

Check my tread.

http://www.celiac.com/gluten-free/topic/89447-hm-any-advise/page__p__769483__fromsearch__1#entry769483

or dumping syndrome- it will make you dizzy.

http://www.celiac.com/gluten-free/topic/79939-dumping-syndrom/page__p__691535__fromsearch__1#entry691535

Share this post


Link to post
Share on other sites


Ads by Google:


What about POTS? If you can't stand long enough, this can be it. I have it. I also have some type of autonomic dysfunction when parasympathetic nervous system is somehow damaged.

Check my tread.

http://www.celiac.com/gluten-free/topic/89447-hm-any-advise/page__p__769483__fromsearch__1#entry769483

or dumping syndrome- it will make you dizzy.

http://www.celiac.com/gluten-free/topic/79939-dumping-syndrom/page__p__691535__fromsearch__1#entry691535

Thank you for this, it is something else that I will bring up. My normal resting heartrate is about 110 and when I am standing for awhile I will check my pulse and it is closer to 180. The last dr I mentioned that too said it was just the way my body worked.

Share this post


Link to post
Share on other sites

On the DH topic area, some have mentioned they were helped by a low salicylate diet, so I looked at the list of foods and realized I was regularly eating some in the high and very high category, and still have some symptoms 6 months after being on a gluten-free diet. And I think having a low body temp. would tie into that also. So while those thyroid tests would probably be a good thing, you might want to look a the sals part of the equation, too. It made sense to me why some days my hands would actually be warm, and some days not... though I'm just a few days in to lowering the sals in my diet.

Check out message number 8 on this thread for some helpful links.

Share this post


Link to post
Share on other sites

Thank you for this, it is something else that I will bring up. My normal resting heartrate is about 110 and when I am standing for awhile I will check my pulse and it is closer to 180. The last dr I mentioned that too said it was just the way my body worked.

The 180 pulse isn

Share this post


Link to post
Share on other sites

On the DH topic area, some have mentioned they were helped by a low salicylate diet, so I looked at the list of foods and realized I was regularly eating some in the high and very high category, and still have some symptoms 6 months after being on a gluten-free diet. And I think having a low body temp. would tie into that also. So while those thyroid tests would probably be a good thing, you might want to look a the sals part of the equation, too. It made sense to me why some days my hands would actually be warm, and some days not... though I'm just a few days in to lowering the sals in my diet.

Check out message number 8 on this thread for some helpful links.

All I can say is WOW! A lot of the things that I eat are on the very high list.

Share this post


Link to post
Share on other sites


Ads by Google:


My old primary care said it was normal and when I was pregnant and in the hospital my heart rate was over 200. A cardiologist did an EKG and said that there was no abnormal rhythm it was just really fast so it was normal for me. I will start saving up money for a visit so that I can see a different doctor.

Not every visit will be so expensive. I saw the director of Neurology institute in Columbia University hospital in New York because pills I tried for POTS were not working for me. I have in addition to it some type of autonomic dysfunction. Now I

Share this post


Link to post
Share on other sites

Hi Alex

I notice you mentioned you eat cheddar cheese. I have stopped eating it ( I love it too) but I now realise that in addition to gluten and corn problems it was making me quite unwell. Probably lactose intolerance related to my gluten problem.

Am also making as much food as I can from scratch and avoiding shop-bought processed foods at the moment. Both this and avoiding cheddar and most dairy is helping a lot. Am going to start a calcium supplement to make up for the cheddar I am not eating.

Anyway just thought I should reply in hopes it may be of some use.

Hope you soon get things sorted out and are much better.

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
      108,156
    • Total Posts
      939,968
  • Member Statistics

    • Total Members
      66,141
    • Most Online
      3,093

    Newest Member
    Victoria Zoey
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it. She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on glutenfreedrugs.com (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was.   
    • cyclinglady, I think Joseph is hoping to exclude celiac disease.   I feel for him, as I also had a hard time accepting my daughter's celiac.      I had this gene test done hoping our GI doctor made a terrible mistake.   But now I have triple prove that my daughter really does have it! I agree with you and others, that if biopsy confirmed celiac disease, you do have celiac disease. (But on occasion, doctors can be wrong, right?) However, I have a distant relative (not related by blood) who thought she had celiac diease for 10 years (no biopsy done), lived a strict gluten free life style, but still suffered from health issues, ended up in the mayo clinic, and found out that she did not have celiac.    She did not have the celiac gene.
    • Our doctor ordered the Prometheus Celiac Plus test for us.   It is some sort of in depth celiac blood test.   This test report showed  which celiac gene my daughter has.   I think you can ask your GI for a celiac blood test with EMA.   When I asked for the EMA test, we got this Celiac plus results back.   I believe Prometheus is the name of the lab. Our insurance paid for this test.   If your insurance won't pay for it, I know there is a lab in Colorado that offer this test for a few hundred bucks.   You have to google for it.   I forgot their name.
    • Why?  Some 35% of the population carries the genes that could develop into celiac disease.  But only a few actually develop it.  It is used to exclude celiac disease and not to diagnose it.  There are some outlier genes too that have been discovered recently, so the gene test is not perfect.   My daughter has tested negative on the antibodies test.  She will have to get retested in the future. But we will not get the gene test.  It may impact her ability to get life insurance or maybe even health!  Just something to consider.  
    • It will turn around, but it probably is going to take more time.  Yes, adhering to the gluten-free diet is critical,  but what doctors fail to tell you is that is can take time for antibodies to decrease.  For some it is a few weeks and for others months to years.   It sounds like you are doing everything right.  Remember, her gut is damaged and eating anything can hurt to digest.  You might consider taking her off dairy for a few weeks until you see improvement.  Then add back in starting with products with the least amount of lactose (e.g. yogurt). Many celiacs are temporarily lactose intolerant.  It might help with the nausea.   When I accidentally get exposed to gluten, I stick with soups and stews, even cooked fruit, like applesauce because it hurts to eat!   Are you sure the medication she is taking is gluten free?  Did you call and confirm with the manufacturer?  Did she have nausea befor she was diagnised?  The side effect of this medication is nausea.  Did the GI prescribe?   Hang in there!  
  • Upcoming Events