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

Symptoms Returning?


LeanneMarie

Recommended Posts

LeanneMarie Newbie

Hi everyone,

 

So I was officially diagnosed with Celiac in late November of last year. So, it's been about 6 months of very strict gluten-free eating (which started the day after I got my endoscopy and was told to start immediately). My symptoms before being diagnosed were constant throbbing headaches (esp. bad when waking up), night sweats, feeling "out of it" a lot of the time, getting SUPER sleepy about 15-20 mins after eating meals (which usually included gluten), muscle/joint pain in my back, nausea, and I really knew something was very very wrong when I started having all the digestive problems (although this was the last of symptoms to pop up, and the last to go, too).

 

So, through February and March I was doing really well, I felt almost totally back to normal. Then late April and May, when things feel bad again. Same symptoms, ramping up over time to now, beginning of June, where I'm feeling similar to how I did before going gluten free.

 

Things were especially bad on May 18th, after I ran the Brooklyn Half Marathon -- extreme nausea, etc. (and this was not over exertion, I have run this race many times) in a way that I could only recognize as similar to what it felt like when I was still eating gluten.

 

As far as I know, I'm not getting cross contaminated. Nothing has changed, and if anything, I've learned more and become MORE strict. My boyfriend and I are EXTREMELY careful with any foods containing gluten (he cooks his pasta in a separate colander, is the only one to use the toaster, uses a different cutting board, etc etc.) at home, and I usually bring my lunch to work from home. For dinner we sometimes go to dinner but only at the few places I've identified as gluten-free friendly, because I hate grilling the waitstaff about every sauce and ingredient (which sucks, because this used to be a big part of my social life).

 

What else could be going on? Does it just take this long to heal? Could I now be more sensitive than when I started eating gluten free? I am so frustrated and feeling sick again...and I thought I was out of the woods :( Any help is appreciated. Thanks.

 

-Lee

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Are you consuming milk products? The villi get damaged from celiac disease and are often unable to release the enzymes needed to digest lactose (milk sugar).

BTW, everyone heals at a different pace. Some folks take months or years to heal.

NatureChick Rookie

I'd get tested for vitamin deficiencies as an easy way to rule out potential problems.

Exercise, especially at the extreme level of running marathons will deplete some nutrients more than others. You can look up which vitamins are more affected by exercise. Ironically, many of them are the vitamins and minerals that are added to wheat flour, so when you're eating gluten-free, you have fewer easy sources to get them in excess than if you were eating bread, cereal, or pasta made with fortified wheat flour. Niacin, riboflavin are the only two that i remember off the top of my head.

The falling asleep after eating would be a symptom of low blood sugar. Looking up reactive hyperglycemia or hypoglycemia isn't going to help much because they don't know causes or cures. But I mention the vitamin deficiencies because some that are more common in athletes also affect your body's ability to metabolize food via the liver. So being deficient in something could cause your blood sugar to tank if you are exercising more than you are eating and the liver doesn't have the right ingredients available to access the calories and energy in fat stores.

You can also look up gluconeogenesis for a more scientific explanation. 

That is the only thing that comes to mind based on the clues you've given. But gluten likes to damage lots of organs. I have occasional problems with reactive hyperglycemia but haven't figured out the cause yet. It was definitely worse before going gluten-free, but has arisen a few times since. Fructose intolerance looks like a possibility. That one doesn't mean you can't have fructose, just can't have a whole lot of it all at once without being balanced out with glucose and protein.

If you had vitamin deficiencies before going gluten-free, they could persist six months later, even if you were fully healed. Some are really difficult to get back on track.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    2. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    3. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    4. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    5. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,885
    • Most Online (within 30 mins)
      7,748

    KateFC
    Newest Member
    KateFC
    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

    • Jay Heying
      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • 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.