Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Can Anyone Share Any Insight As To What This Is?
0

7 posts in this topic

Hey guys! I’m Katie from Australia, hope you’re all having a most excellent day wherever you are ☺ Sorry to jump right in and share my story with you all, I don’t mean to be rude, I’ve just been dealing with this stuff for so long and don’t really have much in the way of answers, and am curious as to whether people with first-hand experience of this could possibly offer me a little insight as to what I may or may not be dealing with. I sincerely apologise, this is probably going to be insanely long and overly detailed.

To start off with, my mom has Lupus, and has always been fairly gluten intolerant, not to the point of being sick, but it has never really agreed with her. I’ve had a few random complaints my entire life: Super sensitive to cold, my hands and feet get so cold they almost go numb, tiny floaters (about the size of a freckle) in my vision, I’m always hungry, get the shakes and become really irritable if I don’t eat really regularly, fibrocystic breasts, 'growing pains', have always had problems with sinus and ear infections, tons of bruises I don’t remember the cause of, mood swings, and I’m a lot smaller than everyone else in my family – I was always by far the tiniest person in my class, and now, at 23, I’m about 5’1 and weigh about 95 pounds no matter how much I eat. The past few years since I was about 18, I’ve become increasingly tired, I can sleep ten or twelve hours a day and still be yawning by midafternoon. I can go to an all-you-can-eat-buffet, eat more than all my friends including guys, and be raiding the cupboards with a growling stomach two hours later with my friends like “How the hell are you hungry?!” I’ve become lactose intolerant, when I previously never was, and my iron levels are pretty low. I go to the bathroom probably three or so times a day easily, especially right after I get up or eat breakfast, I never thought twice about it but apparently that’s definitely on the upper side of normal. Also (overshare?) I have a complete, total lack of libido. Also have always had a bit of an issue with anxiety/depression etc, but not the point where I’ve ever felt as if I needed to be medicated for it.

I put up with these symptoms for a while, my GP mentioned it was probably low thyroid or something, I researched it and it sounded legit, but never actually did anything about it. Then in about July, I just started feeling crappy. Really crappy. Chest pains which wouldn’t go away, joint and muscle pains in literally every single part of my body, headaches and migraines like I’ve never had before, jaw and cheekbone pain, sore throat, aches and ringing in my ears, alternating diarrhea and constipation, abdominal cramps that almost feel like period pain, aches under my ribs, tingling in hands and feet, back pain, irregular periods, lower abdominal/groin pain .. I can’t figure it out. I’ve had a million blood tests (including to check my ANA for autoimmune things like lupus), ultrasound of my pelvic area, chest x-rays, hip x-ray, diabetes tests, checked out by an ENT and oral surgeon, and the general consensus is that it’s all in my head and should probably look into taking antidepressants. The only thing that showed up, out of everything, was that my iron levels are low. My full thyroid panel was perfect.

Determined to prove that I’m not a crazy person, I went to see a homeopathic GP, who did some tests and told me my adrenal glands weren’t working optimally (apparently common in people with autoimmune genetic links) and that I was probably sensitive to gluten, and over time it has messed with my insides to the point where my body can no longer deal with dairy, either. I’ve only been gluten and dairy free for a week, but I can notice some changes .. I still have the joint pains, bloating and cramps, but my ears have stopped hurting/ringing, my hands and feet have stopped tingling, and those visual floaters I’ve had my entire life have disappeared. I know after only a week it’s hard to tell, but seriously .. Could I have missed this my entire life, and never even considered this as a cause? Anything recommended that I do as far as proving/disproving this, besides just not eating gluten? To be honest I’m a definite carb junkie, nothing makes me happier than copious amounts of pasta, and I rarely eat meat because it’s never really appealed to me, so if this is the case, it’s going to be a pretty tough (but hopefully worthwhile) transition for me. I’m not entirely convinced that gluten intolerance can cause all of these symptoms, especially the joint/muscle pain, but if anyone has any kind of insight or advice they’d like to share with me, it would be much appreciated.

Thank you so much, and sorry for typing so much! I just needed to get all of that off my chest.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Most often times celiacs are former carb junkies. I'm entirely sure how specific of a term that is anymore considering that 50% of the US population at least (not sure about AUS's make up) is set to be diabetic/prediabetic in the next 10 years. HALF of our population is set to develop severe regulatory health issues as a direct result of eating too many carbs and yet no one really seems to make the connection for some reason. The bruising thing is something I noticed at the beginning of your post which may be partially explained additionally by your low meat consumption that you mention near the end. Eat meat, good meat in mouth means good meat on body. Carbs have a noticeable addictive effect on us mentally and physically and if you're a carb junky you'll never truly be full because carbs burn up so ridiculously fast/cause severe insulin spikes/leads to insulin resistance/leads to excess lipid oxidation/leading to hypoglycemia for a short while until you eventually cross a threshold putting you in hyperglycemia (diabetes).

One thing to be mindful of when doing your gluten-free trial is your overall carb consumption. If going gluten-free to you means that you're also reducing the amount of carbohydrates that you're consuming then it might not be so easy to determine which increases in health are related to the reduced gluten intake or the reduced carbohydrate intake. Try going to a site like nutritiondata.com or livestrong.com and determining what your previous carbohydrate intake was and try matching that with gluten-free alternatives. When doing this, the important number to look at is the Net Carb content which is the Total Carbohydrates - Fiber. Fiber will burn in a calorimeter (instrument used to determine those caloric measurements) but it will not "burn" in your gut so it doesn't count as a negative.

That being said, wheat increases blood sugar higher than anything else out there.

Edit: as to your gluten-free trial, certainly keep it up. Some people can unfortunately go for a small handful of months before seeing any real improvement on the diet due to individual severity of damage. Gluten certainly can cause most if not all of the problems you mentioned above, a gluten intolerance is can be an amazingly destructive disease but it affects everyone in different amounts/ways. The tingling in your hands and feet you mentioned, is it an electric tingling or a kind of itchy tingling underneath the skin and primarily located on the palms of your hands and sole of your feet?

1

Share this post


Link to post
Share on other sites

yub7gdddddddddddddddddd`]]]]

To start off with, my mom [My sister has Lupus and Porphyria] has Lupus, and has always been fairly gluten intolerant

[i was told to follow a gluten free diet the rest of my life].... Super sensitive to cold, my hands and feet get so cold they almost go numb, tiny floaters (about the size of a freckle)... [You discribe me well with your entire post]

Things different, you didn't mention allergies to drugs, multi-chemical sensitivies, allergy to sulfa, sulfites, sun, eggs, corn, etc etc etc.

Today I am being tested with UV to hopefully rule out Porphyria. Lupus also hasn't been ruled out. My health issues are many. MS has been ruled out. I have been diagnosed with other autoimmune diseases [Ankylosing Spondylitis (HLA B27 positive), celiac, vitiligo and Raynauds). Unfortunate for me autoimmune diseases run in my family.

Meat, Potatoes, vegetables (have problem with as they have natural sulfur - which I have very low tolerance to - that changes into sulfites in our bodies) but I still eat. I follow the celiac diet every day. Pasta made from rice is a main staple in my diet.

Hope you get answers soon. The information I provided is about me. I am hoping autoimmune diseases don't run in your family. Take care

Hugs

Gerri

0

Share this post


Link to post
Share on other sites

Did anyone test you for celiac disease? Once you're gluten free, your tests will be normal whether or not you have it. Testing is imperfect, but is at least a start.

Symptom-wise, it's entirely possible. You should also be checked out for nutrient deficiencies (vit D, B-12, magnesium, folate, and... there are more). Those deficiencies can contribute to many of your symptoms. BTW, I shared many of your symptoms and they have resolved.

Whether or not you do tests, and they come back positive, the diet trial is your only truly valid test. If it works, keep it up.

0

Share this post


Link to post
Share on other sites

i just love it that the docs "RUN ALL THE TESTS" but never test for Celiac <_< so beyond annoying to me... they should ALWAYS test for it if you have the kind of complaints YOU have... OR the doc is looking at ANY autoimmune diseases...

as a layman- i would guess you had Celiac or Gluten Intolerance, Hypothyroid (possibly Hashimoto's), Adrenal Fatigue, B12 deficiency... ****i am only thinking outloud- for u- hoping to point u to the right tests...

you said your thyroid panel was "perfect" - but its possible it wasnt- i only say this- because the range for TSH most docs are using is outdated. mine was "perfect" 4 years ago- IT WAS 4.65!!!!!!!!!!!!!!!!! that's not perfect <_< but the range then went up to 5. i think you should get a copy of your results to look at the numbers..

and i think you should get a celiac panel.. but you would have to consider eating gluten again for an accurate test.

but those are my guesses... i hope you find your answers and feel better :)

0

Share this post


Link to post
Share on other sites




Did all that testing include a celiac panel? You'll want that done before you go gluten-free, as SB2178 mentioned. Also, what was "perfect" for your thyroid? We are starting to realize that what used to be considered high-normal TSH can be an early sign of hypothyroidism.

It is very possible to be gluten intolerant and have nothing show up on the celiac panel. The "test" is your response to a gluten-free diet. It can be absolutely life-changing and we've seen a very wide range of symptoms around here from gluten.

0

Share this post


Link to post
Share on other sites

Just adding another voice to the stay on gluten, get the celiac panel, consider a biopsy, and after testing is completed definately start a strict gluten free trial diet for at least 3 months. You're symptoms sound like mine and you may want to consider talking mom into eliminating gluten alltogether as well.

0

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
      104,695
    • Total Posts
      921,778
  • Topics

  • Posts

    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,701
    • Most Online
      3,093

    Newest Member
    Dtroutmann
    Joined