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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,692
    • Most Online (within 30 mins)
      7,748

    Linda M Rush
    Newest Member
    Linda M Rush
    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

    • Gigi2025
      Since 2015 we've spent extensive time in Italy and I've been able to eat their wheat products without incident. Initially, I was practically starving thinking foods in Sicily were not gluten-free.  An Italian friend who had lived in the US for over 20 years said she had celiac/gluten-free friends from the US who could eat Italian wheat products without problems. Hesitantly, I tried little by little without issues.  A few years later at a market, I asked a bread vendor if they had gluten-free loaves. Turns out she had lived in LA, said groups believe it's not the gluten that's causing our bodies harm, but potassium bromate; these groups have been trying to ban it.  Bromines and other halogens wreaks havoc to our endocrine system and, more specifically, our thyroids and immune systems. When bromines are ingested/absorbed into the body, it displaces iodine causing other health issues. Potassium bromate is a powerful oxidizing agent (dough 'conditioner') that chemically changes flour to enhance elasticity, bleaches the dough, and ages the flour much faster than open air.   Shortly thereafter while visiting friends in California, one family said they had gone gluten-free and the difference was incredible. The reason they choose this path was due them (a biologist/chemist/agriculturist scientist) having to write a portion of a paper about a certain product for the company he worked. Another company's scientist was directed to write the other portion. All was confidential, they weren't allowed to know the other company/employee.  After the research, they learned gluten was being removed from wheat, sent elsewhere, returned in large congealed blocks resembling tofu, and then added to wheat products. Potassium bromate has been banned for use in Europe, China, and other countries, but not in the US. Then we have the issues of shelf preservatives and stabilizers. What are we eating?  Why? We spend long periods of time in Italy and all has been good.  We just returned from an extended time in Greece;  no issues there either.  There is a man there we learned about on a travel show about Greece who walks the hills, picking herbs, pods, etc.  He is a very learned scholar, taught at the university level in Melbourne. It took a few days to locate him, but were finally successful. He too, is concerned about the additives and preservatives in American food (many of his customers are Americans, haven't been in the best of health, and have become healthier after visiting him). He suggested taking a food product from the US and the same product in Europe, and compare the different ingredients. Then ask why these things are being allowed in the US by the 'watch dog' of our foods and drugs. It would be amuzing if it weren't tragic. I'm presently looking for flour from Europe that I can make my own bread and pasta as the gluten-free bread is now $7.99 a (small) loaf.  BTW, studies are showing that many gluten-free individuals are becoming diabetic. My guess is because the gluten-free products are high in carbs. This is only my experience and opinion garnished by my personal research.  I hope it helps.  
    • knitty kitty
      Symptoms that get worse if you don't supplement is a sign of malabsorption, possibly due to Celiac disease. Blood tests for nutritional deficiencies are not very accurate, and should be done when you have been off of supplements for eight to twelve weeks, otherwise the vitamin supplements you've taken will be measured.  The blood circulation system is a transportation system.  It transports the vitamins you've absorbed around the body, but blood tests don't give an accurate picture of the vitamin and mineral stores inside organs and tissues where they are actually used.  You can have "normal" blood levels but still have deficiencies.  This is because the brain demands stored nutrients be put into the blood stream to supply important organs, like the brain and heart, while other organs do without.   If you are taking Thiamine Mononitrate in your supplements, you are probably low in thiamine.  Thiamine Mononitrate is used in many supplements because it won't break down sitting on a shelf.  This also means Thiamine Mononitrate is difficult for the body to utilize.  Only thirty percent of Thiamine Mononitrate on the label is absorbed and even less is able to be utilized by the body.  A different form of Thiamine called Benfotiamine has been shown to promote intestinal healing.   Talk to your doctor about doing a genetic test to look for Celiac markers.   I'm concerned that if you do a gluten challenge (10 grams of gluten per day for a minimum off two weeks) in your weakened state, the nutritional deficiencies will become worse and possibly life threatening.  
    • ElisaAllergiesgluten
      Hello, good afternoon!   I apologize, I didn’t see a notification and I’m just reading this. Thank you so much for sharing your thoughts and the link. Yes you are absolutely right, even so trying to get a response from them has been extremely difficult. They don’t answer but I will your practice of “guilty until proven innocent.”   I like and have a sense of trust here in this website, everyone is honest and thoughts are raw. The mutual understanding is amazing!   thank you Scott!
    • Scott Adams
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
×
×
  • 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.