Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Freaking Exhausted!


realmaverick

Recommended Posts

realmaverick Apprentice

This evening, I figured I'd have some fries as I was about to vomit at the idea of more veg. Not long after I eat, pork and fries, I felt extra tired. I still feel extra tired now.

I freaking hope to god I am not intolerant to potatoes. I couldn't care less about the other nightshades, but potatoes would make my diet a whole lot harder.

I guess I should also omit potatoes for a while and see how I go.

I just need to find one thing, that I can eat, that doesn't make me want to be sick at the idea of eating it. Hmm

Maybe I should starve myself for a week and see how I bloody feel. Grrr


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



Celiac.com Sponsor (A8-M):



momof4gf Rookie

I know you said you're in the UK so I don't know what's available to you. My son suffered from about 2 years old with at first coordination and strength problems. Those have continued and he has always been a very "sluggish/foggy" kid. All these conditions worsened over time. Though we went to lots of different doctors, no doc ever diagnosed him. Finally at 11 years of age I took him to a naturopathic doctor who did a blood test for food sensitivities through Biotek labs and we discovered he was sensitive to gluten, dairy and egg. She also did a complete nutritional eval called NutrEval by Genova Diagnostics. He was extremely malnourished/deficient even though he is tall for his age and slightly overweight. Through these we were able to eliminate all his sensitivities from his diet and also put together a customized nutritional supplement program. If you have access to something like this I would highly recommend it instead of trying to guess at your sensitivities and nutritional deficiencies. The results we saw in him were immediate and really quite amazing to both him and I - his strength, energy and coordination were the best they had ever been and he slimmed down immediatly and he just continues to improve. Good luck!

Looking for answers Contributor

I agree with the last poster. I had no idea that I was allergic or intolerant to avocados (my favorite thing in the world) and eggs until I had blood tests done. Since cutting them out, my immune system seems stronger, I'm not as tired, and I don't sore throats all the time like I did before.

Also, I recently went to Whitaker Wellness Center and my doctor suggested I start taking low-dose naltrexone. I haven't started it yet but I've been doing my research and it sounds promising...very inexpensive too. My doctor said she believes it will "quiet" down my overactive immune system so I can tolerate more foods in the future and improve my overall immunity.

Open Original Shared Link

GFinDC Veteran

gfin thank you for your helpful info :) i feel as though almost everything i eat causes a reaction i dunno maybe its my depression over this illness, it has a way of making you think your crazy:( I just cant live on fruit vegis and meats and no crackers or boxed things atalll i even seem to be reacting to fruits and vegis as well i feel like i cant win i think im going to make an appoint with the krogan health center here in nj who specialize in celiac and have them do a full checkup.

I just want to feel perfect and healthy and great like everyone else says after they start the gluten-free diet!People have a way of playing down this disease but it is a horrible disease to live with and i have a hard time excepting i have it and my kids have a chance of one day developing it because of me, im soo heartbroken about this:( sorry for the meltdown i just feel like people dont understand me:(

Hi MM,

From reading this site It is somewhat common for people new to the gluten-free diet to have a period of adjustment where GI symptoms seem to occur for no apparent reason. Basically you are changing the nutrients you feed not only your own body, but also all the microscopic inhabitants who live in your gut and depend on your foods for survival. Some of them may be very dependent on the gluten proteins you were ingesting before and may not fare well without them. The poor dears may start dieing off in alarming numbers in fact. A get well soon sympathy card could be in order, not! :D One site I read suggested that 50% of stool weight is dead bacteria usually. That's a bunch of bacteria. We are not really just a standalone organism like we generally think, but are a symbiotic organism with lots of little bacteria keeping us company all the time, and assisting us with food digestion, vitamin creation, and toxin breakdown. We have a bunch of little helpers. Go to a quiet room and listen closely for the song of the helpers. Ok kidding on the song part. :D But, anyhow, all this dieing off and new bacteria moving in and taking over can lead to gassiness and other symptoms. Have you ever seen those movies where the new neighbors move in and all loud and obnoxious? That's the general situation. Basically your helpers are in chaos for a while. It may help to avoid sugars and take a good dairy-free pro-biotic. And try some digestive enzymes too. All this is my own version of common sense based on reading and so on not any scientifical-like proof or research. Digest it if you wish. Or read up on dysbiosis if you want more info.

Open Original Shared Link

Another common problem for new people is not really understanding how careful we have to be avoid gluten and cross contamination of our foods. It doesn't take much gluten to make some of us very sick. And the other thing is secondary food intolerances, which can also cause many severe symptoms.

The thing about not being able to do without crackers or breads may just be an adjustment thing IMHO. It took me a while to adjust also, and learn to eat differently. Lots of the foods I had been eating I was just in a habit of eating really, and I had to learn new habits. There is also a withdrawal period some people go through when stopping gluten. Gluten can act similarly to an opiate in the brain, binding with the same receptors. Also, you can probably satisfy some of that desire by eating Mission brand corn tortillas, or some other gluten-free food replacement items. gluten-free crackers, chips and beers are available.

I can tell you that I feel pretty ok now, although it took me a good 3 years to feel that way. Once I eliminated all my food intolerances, (some of which didn't show up right away), it made a big big difference. There were times I wondered if I would ever get really better. For me the biggest turning point after quitting gluten was stopping all soy.

realmaverick Apprentice
I can tell you that I feel pretty ok now, although it took me a good 3 years to feel that way.

Reading stuff like that makes me feel sick to the pit of my stomach. If it took me 3 years to feel well, I'd most likely lose my company and thus everything I've worked so hard for. I need to wake up soon :(

kareng Grand Master

I felt tons better 3-4 months. Carefully took my vitamins in the proper way. That got to be a pain.

Loey Rising Star

Thanks for the encouragement everybody. I don't know anybody with celiacs or issues similar to my own. It's difficult when everybody else just appears to be able to eat whatever they want and still feel fine.

Jenn, was dairy your secondary intolerance? I remember as a teen, everytime I eat cheese, my face would itch and breakout. Though that seemed to wear off as I got older. But maybe it's just showing itself in different forms.

I'm at the point now, where I'm doubting whether I'll ever feel awake and for the fog to be gone. It's just been so long now and nothing seems to work or help.

I've been and bought what appears to be a good iron supp, it's in a capsule form and I believe 50mg.

I'm going to be eating nothing but fruit, veg and meat for a few weeks. Though I already feel kinda sick at the idea lol

You've been SO helpful to me with many of my questions. I'm on a basic elimination diet (just eating rice, veggies and eggs - I couldn't stand the smell of meat anymore). I totally gave up dairy and it did help my energy level. I'm drinking Almond Breeze (almond milk) and it's delicious (don't know if they have that where you live). I also agree with the vitamin deficiencies.

I go in for my ulcer biopsy tomorrow and then plan to make an appointment with a GP to get blood work done. I had serious Ataxia issues.

So try giving up dairy and look into the vitamins. I'm so sorry you're going through this rough spot. We're all rooting for you!!!!

Loey smile.gif


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



Celiac.com Sponsor (A8-M):



realmaverick Apprentice

Thanks so much :)

I've actually been feeling a little better today. Still tired but my mind has felt less foggy. I've found it easier to think and work, which is something.

I've been eliminating dairy and nightshades primarily. Though my main diet has consisted of meat, fruit and veg. Other than that, I have eaten cashew nuts and some fruit gums, just to keep myself sane haha.

Both meat and veg are making me a little sick at the thought of eating more. I've been eating about 8 pieces of fruit, probably too much.

Loey Rising Star

Thanks so much :)

I've actually been feeling a little better today. Still tired but my mind has felt less foggy. I've found it easier to think and work, which is something.

I've been eliminating dairy and nightshades primarily. Though my main diet has consisted of meat, fruit and veg. Other than that, I have eaten cashew nuts and some fruit gums, just to keep myself sane haha.

Both meat and veg are making me a little sick at the thought of eating more. I've been eating about 8 pieces of fruit, probably too much.

Glad to hear you're feeling better. I'm sending lots of positive energy your way! Can you eat rice? I make a great rice omelette and add in hemp seed for protein (and nuttiness). It gives me a little variety. As I mentioned I haven't been able to stand the smell or taste of most meat (a latent vegetarian?). biggrin.gif

I'm off to finally have my ulcer biopsied. Will probably be offline until tomorrow. I'm a little nervous because this is a new doctor in a new town who was initially dismissive with me. I know it will be fine, though. I just miss my old doctors l as I had been with them for 18 years and the hospital that they used was huge.

Loey unsure.gif

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,836
    • Most Online (within 30 mins)
      7,748

    Art Glassman
    Newest Member
    Art Glassman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/      
    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
×
×
  • Create New...