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

New Here, New To This.......


andreikirev

Recommended Posts

andreikirev Newbie

Hello,

So I have a bit of a story as to why im here. Several years back I was in the military and underwent a series of emotional and physical stresses I would label as severe. During the middle of these experiences I became very sick with stomach issues. This led to lots of other things, bad troubles sleeping, stomach discomfort, diahrea, severe fatigue, cloudy thoughts... The doctors in the Navy had a hayday experimenting with all sorts of possibilities as to what was wrong with me. I dropped like 40 pounds after several months of this. Eventually the doctors were baffled to a point they discharged me ( I assume out of fear for whatever reason) honorably. I became so fed up with doctors over the next year and trying to figure out what was wrong with me. May i add that i had a very horrible diet in my life for the whole extent of this...Living on all sorts of unhealthy combinations... I have always been a huge bread fanatic over the course of my life... Either way this all led to me dealing with these symptoms constantly for years. I was so fed up with doctors not finding out whats wrong that i took it upon myself to try and manage. Medicines and therapies did not help. Just recently over the past few months I resorted to trying to find dietary reasons for my problems.... It has essentially led me here... I have spent the past 2 days strictly gluten free with nothing but rice, plain chicken, hemp oil, and a couple other small things to keep myself fed... I am noticing a much greater tolerance to my meals with almost no nausea after my meals.... The difference was felt oddly sooner then I thought would be... This would be the short story of what led me here... I wanted to ask a community such as this if I may be onto the right thing here... I have a couple distant but blood related family members with celiacs so I thought i would try to see if this community could help me figure out what to do from here and if i am on the right track... Sorry for the long intro


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

I think you've found the right community! Yes, it sounds as though you may very well have solved your medical mystery--many of us have similar stories to tell. Very few (if any) of us are fans of doctors as a result of many, many years of misdiagnoses and indifference on their part. Before you go much further with the diet, though, you should probably get tested for celiac by way of the full celiac panel. Do you have a good doctor at this time? Once you've been gluten free for a while, your blood tests will come out negative, so you should get tested right away.

If, however, you don't have health insurance, you may just wish to continue to eat a gluten-free diet and read the information on this forum. You won't have an official diagnosis, but you'll feel a LOT better!

shadowicewolf Proficient

imo you should get tested before you continue with the diet. This requires you to be on gluten.

When, and if you go in, ask for the full celiac panel.

Only reason i'm suggesting this is if you go back on it now it will be less severe then if you wish to get an official dx later and have to do a gluten challenge for... three months i believe.

andreikirev Newbie

I appreciate the responses... I am not on health insurance as of this moment... I have moved back from over seas and still establishing myself back in my home state. I am looking into my options for at least some sort of cheaper testing method. I am not exactly concerned about a certified diagnosis. I just want to feel better. After 4 years of what i have gone through symptom wise if gluten free is the answer im prepared to do it no questions asked... I dont care about knowing whats wrong so much as i do getting better if you get me. I am underweight and hate it... could barely get myself to eat one meal a day for years. and now so quickly im seeing improvement on myself so i felt like this would be a good community to aquaint me with changes. I find forums very helpful. . . and as i sure you get alot on here.... im loaded with food questions and google doesnt always spit out comforting answers when it regards to food.

GFinDC Veteran

Hi Andrei,

Welcome to the forum! I posted some thread links that would be good reading for you. Getting better on the gluten-free diet is a good reason to stay on it. It is pretty common for people to have kind of a rollercoaster progress for the beginning of the gluten-free diet. So you may find yourself getting sick and then getting better getting sick again etc. Your body needs some time to heal and the bacteria changes in your gut can result in some issues. Some people even have withdrawl symptoms from gluten. Try to avoid processed foods for a while and stick with whole foods. In other words nothing in boxes or pre-made meals. Cooking from scratch is much safer to start out, and you don't need to spend lots of time reading labels in the store.

People also report being more sensitive to small amounts of gluten after being gluten-free for a while. So being careful to avoid traces can be important. You should get a new toaster, and colander. Stainless steel or cast iron pots and pans are ok if scrubbed thurougly. Scratched teflon pans and plastic and wooden utensils should be replaced, as they are difficulty to clean adequattly.

If corn doesn't bother you then Mission brand corn tortillas are a good sub for bread. Warm them up a ilttle so they bend without breaking. Rice cakes and peanut butter are ok except for Quaker brand is somtimes a problem. Eggs and meats, nuts and fruit and veggies are good food choices.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

andreikirev Newbie

I appreciate the response with tips on this. I am getting well aquainted with eggs, rice, corn chips, and I am bulking up on some chicken and potatoes.. I will probably stay pretty strict on that for a while... Each meal im noticing more and more of a tolerance without that fatiguing nausea afterwords. Im glad I love to do experimental cooking... I was feeling a bit bummed out earlier but then i sat down to see what kind of items i have to get creative with and im surprised to say the least. I may have to do a gluten challenge later because I cannot afford the healthcare or tests as of now... I just want to put some weight back on and feel better.... a formal diagnosis is not of high concern... Once again i truly do appreciate the info :) tons to learn here for me.

SMDBill Apprentice

I essentially started researching on my own to find out what was making me feel so badly. I first feared fibromyalgia because my sister has it, but my symptoms varied too much to think it was that. I found celiac symptoms to almost mirror how I was feeling and after a lot of research I went gluten-free. I did it wrong because I should have gotten tested first, but you're without insurance and have been run through the wringer. At that point I would tend to agree with your method to do the gluten-free thing and if you feel better as a result, stick with it and accept it as if it were diagnosed. Obviously a diagnosis is the proper way to go for many reasons, but if you're unable or unwilling, you've taken the right next step. I would, however, get tested for vitamin/mineral levels to know what needs supplementation, even if it costs you out of your pocket to do so.

I felt like a new man after 2 days and most every symptom was completely gone by 4 days gluten-free. Only my sinus issues lingered longer, but they also lingered longer after being glutened so I assume that's normal for my body. Best of luck to you!!


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Yep, lots of reading is good Andrei, Here are some more threads for when you run out of reading.

The short temper thread is about some of the mental affects of gluten, which sometimes surprises people that don't understand that diet can affect our brains. The cheating thread is a topic that comes up now and again, as people womder how strict they really need to be.

The microwave bread thread might fit with your experimkenting. Easy and quick too.

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

Open Original Shared Link

andreikirev Newbie

These threads have been amazing!!!! You guys are awesome.... So if you are still following my thread i have achieved 72 hours gluten free.... I would like to quote " I feel like a new man". I have a smile on my face that i have not had in years and a full belly that is not taunting me with pain. While i wear myself out kinda of easy there is no doubt I have gone the proper route. My wife is still currently in Bulgaria. When I make my next trip out there in the spring I will go through a proper diagnosis there. The medical costs are practically free for citizens and residents there and the doctors are wonderful. The doctors are lawfully allow to recommend and prescribe homeopathic remedies there as well. I feel I will get much more reliable answers from a doctor that is not paid to tell me one thing without leeway. But yes 72 hours and I just have a feeling I cant describe... Familiar but long since felt. It is quite nice. I long to have the energy to keep up with my 18 month old baby boy... This is very important to me and will motivate me to keep with this diet. I am getting ready to do my first gluten-free grocery visit in a few days... But as a symptom question I would like to ask... would loose stool and random flashes of fatigue be normal along with some brain fog on my detoxing.... I am so lightweight and small that I feel I will detox fairly quickly... 5' 10" and 128 pounds.... if that matters...THANKS AGAIN GUYS!!! The links are great

andreikirev Newbie

P.S ...... with the comment about the short temper.... FOR MY ENTIRE LIFE I have been the most gleeful full of life person people knew... Till I got sick 4 years ago and this irritability came about me that was surreal. It wasnt me... I couldnt convince others as to why I was becoming like this... Like a grouch with no desire to see light anywhere. It greatly affected my relationships in my life and really cut down on my self esteem... I knew inside that it was not who i was and how i really felt... Its like i was involuntarily being an ass to people... I am starting to feel like its the fact i was living in gut pain and nausea for so long and possibly the gluten... I have been so overwhelmingly happy today...I didnt expect such quick energy and mood changes... But each day is better

GFinDC Veteran

Hi Andrei,

Congrats on the 72 hours! You are on your way! I do want to caution you about testing though. If you are going to get tested, it is much better to do that right now. If you wait until later you will need to start eating gluten again for possibly up to 3 months before the antibodies build up enough to show on a test. Even then they may not be detected. The antibodies are mostly in the gut/intestine where they do their work. So if you plan to get tested it is much better to do it right away.

One of the classic signs of celiac disese is called failure to thrive in children. It is when children are slow to grow. These children may have bloated stomachs and poor digestion. Celiac causes damage to the gut and that inhibits absorption of vitamins and minerals the body needs to grow. So children with untreated celiac are ofen shorter and thinner than others.

I had unexplained short temper myself. I became very impatient for a period while I was still eating gluten. Very different from my usual self. Celiac can also cause depression and anxiety.

Celiac is an inherited condition, but not everyone who has the genes will develop celiac. About 30% of the USA population has a celiac gene. But only 1% develop celiac. So your children should be monitored and tested yearly for antibodies. Or at least if they develop symptoms that continue for several months. Celiac is an autoimune condiition and people with celiac have a higher chance of developing another autoimmune condition. Generally it seems like that happens more frequently when people with celiac continue to eat gluten for many years. Usually because they don't know they have celiac. The chance of developing other autoimmune conditions seems to decrease when gluten is removed though.

http://www.celiac.co...-and-Disorders/

It may help to take some extra vitamins during he first 6 months or more. It is good to get tested for vitamin and mineral deficiencies so you know if you need to supplement them.

I hope you stick around and feel free to ask questions. We all started the gluten-free diet at some point and had to learn about it ourselves. So we have an idea what it feels like to start new. :) Congrats again on feeling better, I hope you continue to improve! :D

andreikirev Newbie

Thank you. We will be getting our child tested but as of now our son is 18 months old standing 34 inches tall and weighs 32 pounds... Doctors keep telling us he is the healthiest child they have ever seen. He is always happy and he is past the height weight standards for a 3 year old and not even two haha. It is very nice to see him so healthy. So by the time he is four before school and everything we will get him tested so if need be we can get his diet changed up before he is enrolled in school. As of now he doesnt show the slightest symptoms of anything being wrong. I do understand that i should get tested. But here in the U.S health care is outrageous. I have called every place in my city. I cant get the test for anything under 350 around here. I have played around enough with my diet over the past half year to narrow down what was causing my problems. I do not need a diagnosis to feel better about my decision. I can get a complete diagnosis with endoscopy back overseas for under 100 dollars from the best doctors in the country there. The medical industry does not savagely pillage money from the lower class over there as they do to us here. Like i stated their doctors actually practice homeopathy and are allowed to give all natural suggestions. If something can only be cured by a plant over here doctors are not allowed to tell us that. They are such a profit organization in this country. Sorry to rant about that.... The medical care i get overseas is 1000 times better then what i receive here. If i have to go through the gluten challenge i acknowledge ahead of time that i was pre informed and I am doing so at the risk of terrible pain in the name of a diagnosis....

guest134 Apprentice

It always shocks me how many people here seem to have their doctors overlook celiac. Like what the hell is wrong with the medical community? You don't constantly ignore crohns, ulcerative colitis etc... why do they always look past something so basic? Drives me nuts. Celiacs is MUCH more common than crohn's, I remember reading crohn's was something like 1 in 10,000 and celiac is 1 in 100.

I am in disbelief that you have been overlooked by several doctors for so many years, not once did it cross their minds to test for celiacs... What are they learning in medical school?

Hopefully you found your answer, get the required tests and get back to living a normal life.

frieze Community Regular

It always shocks me how many people here seem to have their doctors overlook celiac. Like what the hell is wrong with the medical community? You don't constantly ignore crohns, ulcerative colitis etc... why do they always look past something so basic? Drives me nuts. Celiacs is MUCH more common than crohn's, I remember reading crohn's was something like 1 in 10,000 and celiac is 1 in 100.

I am in disbelief that you have been overlooked by several doctors for so many years, not once did it cross their minds to test for celiacs... What are they learning in medical school?

Hopefully you found your answer, get the required tests and get back to living a normal life.

.....follow the money......
GFinDC Veteran

Sounds good Andrei, you do what works best for you of course. I agree, medical care is darned expensive here in the U.S. This forum helps a lot because we can share information on what works for us. Here is a thread on nettle tea and inflammation. So the doctors can't hide things from us forever! :)

http://www.celiac.co...r-inflammation/

andreikirev Newbie

I really appreciate that. Homeopathy seems to be the only medical route i can take... My digestive track has no tolerance for lab created meds. and not sure if its mentioned on here and I will be sure to pass it onto the correct threads. But if anybody here struggles with Insomnia I would highly advise Skull cap or Valerian root as a excellent sleep aid. The valerian even promotes peaceful dreaming. Takes a few days to get working good and doing one week on and off swapping between skull cap and valerian root can really help keep anxiety down as well. Or depending on how many people here are medical marijuana smokers that works great as well. Ill go see what bit of info I can pass along here from my years of trial and error with symptoms. Thank you again :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748

    Eric bell
    Newest Member
    Eric bell
    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

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...