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

Do i have celiacs disease or something else?


XaK

Recommended Posts

XaK Newbie

Some of my history

First off I will go through a bit about me.  When I was born I had Tetralogy of Fallot with four operations done some valve patches and some overgrowth removal. in 1994. I was also diagnosed with Aspergers sense like 3 years old or less. I also was once diagnosed with asthma but grew out of it? 

Medication history

20 years fluvoxamine quit cold turkey once then got back on it again then taper off of it in that time frame of 2 weeks of 50 mg - former and this year

Then was told to take Zoloft started at 25 mg for a week then went to 50 mg for a week then tappered off at 20 mg this year

Ive also taken naproxen at the same time for headaches which i read on a website can cause upper gi bleeding which i know you shouldnt diagnose yourself 

 

Note 2 mods  i read celiac can cause bone problems. and all these i experience

 

Copied and pasted i just hand wrote on my about me from my profile 

About Me

Was born with a Broken heart had Tetralogy of Fallot several valve patches and overgrowth removal in 1994.

Was told I had asthma apparently I outgrew that

Was diagnosed with Aspergers Syndrome to young to even remember when

Was severely bullied from elementary - high school; Several times i fought the bullies back and got suspended. :) Yet they didn't...

Obese for as long as i can remember I can always lose weight but i always am fat can't seem to lose the fat itself ever. (Is it Celiacs?)

Sense September 2017 been feeling really bad

Unexplained rash on my upper arms non itchy red bumps and little bumps that rise a bit

Also have a screwed up hip somehow and i mean really screwed up hip causing tingling or is that the Celiac disease? 

Been to like 20 doctors sense september all say nothing is wrong even 2 ER visits. and many chiropractor visits to come and been to gastro

Always feel tingly especially in leg oh and my hip is screwed up and no one knows how i mean i used to leg press 500 lbs but no bone fractures or signs of bone cancer etc asked the chirpractor

Been having restroom problems GI doctor said nothing felt wrong and simply prescribed me probiotics which i have yet to buy as i went 2 days ago work full time and am busy.

My stomach makes growling noises like all the time.

My mom dad and sister have GERD and grandma have ibs my mom and sister have tonsil stones not sure if i have either of those though i feel like something is stuck in my throat 24 7. near the tonsil area. though recently i gargled salt water and it lessened.

Ive had like 6 + blood tests several CBC tests and and one Lymes disease test and all negative. Couple of times i had low blood pressure i do get anxious and worried though but thats understandable when going to doctors etc.

Also went to another GP recently been having ear pressure problems in my right ear and when i hold nose and breath i hear heatbeat also hear droning sound all day in that ear not tinnitus. ETD maybe? allergy related dont know. i know i used to get bad seasonal allergies.

I have to take a lot of poops sometimes i cant tell if its a poop or a fart sometimes i think its going to a poop and its just a fart or reversed dont worry i always make it on time.

i also get like neck throat or some type of convulsions where my ear fills up when pressure every now in than on right side GP said to take flucasatine to see if that helps but worried about its side effects which can cause hyper sensitvity which i already have and read it causes people to loose sense of taste and smell

all this started sense september though and i was on a vacation that did not go well with me even blacked out twice only for like 2 seconds though on a house boat trip in utah lake powell and was a monsoon in the dessert + 110 degrees like every day maybe bumps caused from that did feel like skin was boiling

Could all this be stress and anxiety related from this and caused PTSD i always keep saying ive felt bad sense this vacation i dont think i think about it though i did have a couple of nightmares about it google Monsoon in utah lakepowell several peoples houseboats flipped and lady lost her arm. 

Its either mostly stressed and anxiety related or Celiacs disease l6Z99un.webp

5WHh5my.webp


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

Growing up I was always bullied fellow asperger guy here, often describe myself as a mild sheldon cooper. Anyway The fat thing...yeah I had that til my 20s after I did some stupid stuff and my celiac changed symptoms and I just started loosing weight. I was always tired and to be any kind of active had to chug energy drinks in highschool. The leg tingling, burning sensation (does it seem to crawl and move across your back and arms leaving little red dots with the feeling your skin is on fire?) I found was related to magnesium deficiency and cleared up with supplementing in addition to the gluten free diet. Thing with the magnesium is you need to find the right form for you. If you have constipation then Magnesium Citrate Via Natural Vitality Calm small 1/4tsp (1-2grams) starting and up it 1/4 tsp at a time til full dose over a week and then adjust to tolerance (IE you get loose stools then back down) If you have loose stools already go with Doctors Best Magnesium Gylicinate and dose as they say. Gluten free and supplementing will resolve these.

To your main question do you have celiac.....maybe they have to do a blood test and a endoscope with biopsies to be sure. The disease has hundreds of symptoms and is a bit different with everyone. Keep eating gluten for now as you have to for the testing readup on what kind of blood test to ask for etc here Open Original Shared Link
 

Oh on a side note, us asppies have common issues with gluten and dairy anyway making our problems worse....always have it talked about at summits and seminars on autism you would probably benefit giving up both no matter what after the testing is done.

XaK Newbie
On 3/3/2018 at 9:39 AM, Ennis_TX said:

Growing up I was always bullied fellow asperger guy here, often describe myself as a mild sheldon cooper. Anyway The fat thing...yeah I had that til my 20s after I did some stupid stuff and my celiac changed symptoms and I just started loosing weight. I was always tired and to be any kind of active had to chug energy drinks in highschool. The leg tingling, burning sensation (does it seem to crawl and move across your back and arms leaving little red dots with the feeling your skin is on fire?) I found was related to magnesium deficiency and cleared up with supplementing in addition to the gluten free diet. Thing with the magnesium is you need to find the right form for you. If you have constipation then Magnesium Citrate Via Natural Vitality Calm small 1/4tsp (1-2grams) starting and up it 1/4 tsp at a time til full dose over a week and then adjust to tolerance (IE you get loose stools then back down) If you have loose stools already go with Doctors Best Magnesium Gylicinate and dose as they say. Gluten free and supplementing will resolve these.

To your main question do you have celiac.....maybe they have to do a blood test and a endoscope with biopsies to be sure. The disease has hundreds of symptoms and is a bit different with everyone. Keep eating gluten for now as you have to for the testing readup on what kind of blood test to ask for etc here Open Original Shared Link
 

Oh on a side note, us asppies have common issues with gluten and dairy anyway making our problems worse....always have it talked about at summits and seminars on autism you would probably benefit giving up both no matter what after the testing is done.

Hey thanks for responding sorry for late response work full time and been suffering i do feel like my skin is n fire and tingling all over i do have little red bumps do you have instant messengers like kik snapchat telegram would like to chat. especially as a fellow aspie.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,444
    • Most Online (within 30 mins)
      7,748

    Aliki
    Newest Member
    Aliki
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Thank you so much for sharing your story with such honesty and detail. Please know that you are not alone in this struggle, and your experience, while incredibly challenging, is more common than those "gluten-free miracle" stories on social media would have you believe. It's completely understandable to feel isolated, but your diligence in tracking your symptoms, following up with scopes, and working with professionals is truly commendable. It's encouraging that your villi have healed, which proves you are successfully avoiding the large-scale damage of gluten; however, it's clear your immune system remains in a heightened state of alert. Your intense reaction to the quinoa flakes is a classic sign of this hypersensitivity. Given the reputable brand, it's highly unlikely to be gluten cross-contact. It's much more probable that you are reacting to the quinoa itself—perhaps due to a separate intolerance, its saponin content (which can irritate some sensitive guts), or cross-reactivity, where your immune system mistakes similar protein structures for gluten. Your nutritionist's plan for a simplified, grain-free (except rice) baseline is an excellent strategy. The goal is to calm your nervous and immune systems down completely before slowly testing individual foods, like avocado or even quinoa in its whole form, to identify the true triggers. Remember, healing from years of damage takes time, and setbacks are part of the journey. Be kind to yourself; you are doing everything right by continuing to investigate and advocate for your health. Your path to feeling better may be more complex, but it is absolutely valid.
    • Scott Adams
      When you are first diagnosed it is very normal to feel overwhelmed and depressed about the vast dietary changes that a 100% gluten-free diet entails. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. There are a couple of things that can help you feel like you have "regained control," and the two that I recommend are learning to read ingredient labels so that you can shop with confidence, and the other is learning to become a good cook (if you aren't already). If you can master these two, then you have regained control of your diet, and can eat safely and recover. To help this site has extensive recipes and cooking sections: https://www.celiac.com/celiac-disease/gluten-free-recipes/ https://www.celiac.com/celiac-disease/gluten-free-cooking/ The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.        
    • Scott Adams
      Thanks for sharing this! Bread machines are still the way to go if you want outstanding gluten-free breads.
    • Scott Adams
      What you've described is every celiac's nightmare, and it's very frustrating to be failed by a product that was specifically labeled as safe. It would be great to know which product it was so others here can be warned. Six weeks of inadvertent exposure is a significant insult to your system, and it's no wonder that after two weeks you are still feeling the effects. The body, especially the nervous system when dealing with ataxia, needs considerable time to calm the inflammatory response and begin to heal. It's common for a major glutening to take several weeks to even a few months for symptoms to fully resolve, so be patient and gentle with yourself—you are on the right track. The anxiety and panic are also a very real, physiological part of the reaction for many of us, compounding the feeling of helplessness. What you're feeling is not a step back to your pre-diagnosis state; it's a severe but temporary flare. Focus intensely on the basics now: rest, hydration, and simple, whole foods. You have not undone all your progress. Your body remembers how to heal; it just needs time and a safe environment to do so. You are not alone in this.
    • lmemsm
      Thank you for mentioning that.  My main reaction to gluten seems to be related to the skin and breaking out.  So, I'll definitely take that under consideration when trying to figure out how to better supplement calcium.  I'm trying to use lower oxalate and lower histamine greens like broccoli, baby bok choi, collards and Lacinto kale.  Recently, I've been getting migraine reactions to spinach, possibly from the histamine.  I do use Malabar spinach (not related to spinach) but only a leaf or two in foods and I don't think it has a high calcium content.  I should check into longevity spinach and Moringa again.  Some gardeners in our area grow them.
×
×
  • 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.