Jump to content
  • 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):

Road To Recovery?


Greyhound

Recommended Posts

Greyhound Rookie

Hello everyone! I'm 23 and I'm on the twelfth day of being gluten free and I seem to be slowly recovering from the problems I've been having for the last few years.

The worst symptoms have been exhaustion and aching, both of which seem to be already improving slowly. I'd get home from work, lie down and sleep and sleep and then I'd wake up and need to sleep even more. It was getting to the point where I couldn't do much but work and sleep. I'm still very tired now but at least my sleep is refreshing, which it hasn't been for the last few years.

I also get horrible deep aches all over my body and especially in my legs (worst in my calves and knees). It got to the point where even lifting a arm would make it feel like I'd been weightlifting for half an hour. Just walking up a small flight of stair would make my legs feel like they'd been running non-stop for an hour. They felt like they were full of lactic acid and I got out of breath really quickly. This is slowly getting better, although two days ago it was really bad. Today has been the best day for the aches and it's been amazing just walking on flat ground without them aching. Almost euphoric!

This all crept up on me quite slowly so I just sort of got used to it as me and how I am. I tried different supplements, which sometimes helped marginally but the problems didn't go away. I didn't know what to do.

I don't have many digestive symptoms but I do alternate between constipation and diarrhoea. Again, this sort of crept up on me and I sort of forgot that this wasn't really normal. Lately, though, I'd been getting quite a lot of wind and holding it in in public was getting difficult. It's decreased quite a bit since going gluten free. Very occasionally I feel nauseous when I need to go to do a 'number two'.

I've also lost weight. I've always been slim but my cheeks have hollowed and my face looks bony. The nurse who weighed me last said that I could do with eating more (I can eat lots of anything I want and still lose weight).

I also have frequent headaches and migaraines but today has been the first headaches I've had since going gluten free. There have been hints of headaches or migraines coming on but they haven't appeared.

Another horrible thing is that my brain seems to have deteriorated over the last few years. My short-term memory is quite bad now and I can have a thought only for it to disappear immediately. I believe I started becoming slightly less co-ordinated as well and I noticed changes with my balance (my balance used to be very good, but now I'll occasionally veer to the side a bit a look a bit drunk for a few seconds. Not badly or often but noticeably (to me) more than before.

Every time I went to the doctor, they ordered another anaemia blood test and the results would come back with my iron levels at the low end of normal and they'd tell me to keep taking the iron (what, forever?).

About three, maybe three and a half, years ago I had an operation to remove a large abscess from one of my ovaries. The problems seemed to start then and get worse, but before that I would never really feel properly well - like I'd always be slightly under the weather. So I think I had these problems before but the operation made them worse.

There are some other things that I don't know whether they're connected and I've written loads so I'll leave it at that for now.

I just hope I've finally found what's wrong and that I can start to recover at last. I'm so glad this forum's here. I need some people to talk to about this! :)


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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

It looks like you're one of us that gets the neurological symptoms from gluten? Be very mindful of trace amounts. They seem to bother us a bit more than those with just digestive issues..IMO?

It takes time for the neuro issues to heal, so don't get discouraged! :D

pricklypear1971 Community Regular

I know they tested you out the wazoo for iron but did they test your b's, D's, k, cal/mag? We are notoriously deficient in those too and getting up to the right levels could help your symptoms.

A probiotic and digestive enzyme could help the gas, etc.

Greyhound Rookie

I know they tested you out the wazoo for iron but did they test your b's, D's, k, cal/mag? We are notoriously deficient in those too and getting up to the right levels could help your symptoms.

Nope. They aren't helpful at all :-( Oh, they once checked my thyroid levels (normal), and a fasting blood test (I think for blood sugar?) which was also normal.

No tests for vitamins, though. They seem so complacent. They see my iron levels as being a bit low and they tell me to just take more iron (which obviously isn't working). I know it's in the normal range but they said that the haemoglobin can still be low. That's it. Nothing else considered - not even the cause of the (very mild?) anaemia :rolleyes:

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442

    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...