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

Terribly New Too Gluten Free Living ( Sad And Over Whelmed )


MCKMNL

Recommended Posts

MCKMNL Rookie

My name is Missy.. I am a 37 yr old mom too 4 great kids. I recently , 2 months ago, found out through saliva testing, that I am Gluten Intolerant. I am struggling with this life style change, and feel lost and confused, with all of the info out there on this. A bit of background on my Health. I have no idea how this came about, I have never been sick a day in my life.. never any tummy troubles AT ALL.... I had a baby 10 months ago, and ever since his birth my tummy has never been the same, not too mention the terrible mouth issue I seem too be having. I was aslo told I have Candida as well. I honestly think I had thrush during my pregnancy, but no one treated it. During my pregnancy I noticed this very thick white chessy looking coating that was all over my tounge.. My OB at the time said NO not thrush, cause I had no sores..plus, if I ate anything this pain in my mouth would flare up. Fast foward too my sons birth.. I had a c-section, and he was born in january.. I was pre medicated with a pot load of anitbiotics before, during and after his delivery for MVP. Anyway 10 days after my son was born, my family got this horrrible stomach bug. I twas awful. The stomach cramping alone left you praying for death, the diarreha, and vomitting were horrendous as well. I was sick the longest. About 32 days on and off ( I also from saliva testing know I have a depressed immune system ) so I have all these whammies against me. It took me going too Chicago too get any aswers as too what was wrong with me. I see an Osteopath who has saved my life. He did testing on me that 6 different doctors here labled me as anxious and depressed from my sons birth. Anyway.. My stomach has NOT been right since. I deal with on and off again nausea, i seem too be allgergic too ANYTHING even fruits and veggies.. the minute I eat my mouth will start too burn like I just ate hot peppers, and I swear it feels like sores are about too break out, only they never do. Sort of burning raw feeling in my mouth. I am not sure if this is a symptom of Gluten intolerance or not.

I'm struggling with reading labels when i go shopping. I know it is wheat, barley, and oats that you are too stay away from but when I read it talks about hidden things as well. Like some processed foods.. So I have no idea what I should or should not buy. Can anyone here lead me in a direction (books, or other info )where it is easy too understand and grasp. Do I just look for wheat, barley and oats on the labels, If this is mentioned.. what, then don't buy it? What do they mean by hidden things in processed foods?

All I know is I am allergic too EVERYTHING, even applying my make-up will make my face burn, and turn red. I have never been Ill like this in my life, in fact up until my sons pregnancy which Is when I really think this all started, I thought I was rather healthy :(

My Osteo wants me too do the Candida diet for about 5 months, but I struggle with that too.. No fruit...thats a tough one for me..Is there any books that simplify there information.. something that offers shopping lists, or do's and don'ts too this life style change. :huh:

I would really appreciate any thoughts or help on this

Missy


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



Celiac.com Sponsor (A8-M):



mandasmom Rookie
My name is Missy.. I am a 37 yr old mom too 4 great kids. I recently , 2 months ago, found out through saliva testing, that I am Gluten Intolerant. I am struggling with this life style change, and feel lost and confused, with all of the info out there on this. A bit of background on my Health. I have no idea how this came about, I have never been sick a day in my life.. never any tummy troubles AT ALL.... I had a baby 10 months ago, and ever since his birth my tummy has never been the same, not too mention the terrible mouth issue I seem too be having. I was aslo told I have Candida as well. I honestly think I had thrush during my pregnancy, but no one treated it. During my pregnancy I noticed this very thick white chessy looking coating that was all over my tounge.. My OB at the time said NO not thrush, cause I had no sores..plus, if I ate anything this pain in my mouth would flare up. Fast foward too my sons birth.. I had a c-section, and he was born in january.. I was pre medicated with a pot load of anitbiotics before, during and after his delivery for MVP. Anyway 10 days after my son was born, my family got this horrrible stomach bug. I twas awful. The stomach cramping alone left you praying for death, the diarreha, and vomitting were horrendous as well. I was sick the longest. About 32 days on and off ( I also from saliva testing know I have a depressed immune system ) so I have all these whammies against me. It took me going too Chicago too get any aswers as too what was wrong with me. I see an Osteopath who has saved my life. He did testing on me that 6 different doctors here labled me as anxious and depressed from my sons birth. Anyway.. My stomach has NOT been right since. I deal with on and off again nausea, i seem too be allgergic too ANYTHING even fruits and veggies.. the minute I eat my mouth will start too burn like I just ate hot peppers, and I swear it feels like sores are about too break out, only they never do. Sort of burning raw feeling in my mouth. I am not sure if this is a symptom of Gluten intolerance or not.

I'm struggling with reading labels when i go shopping. I know it is wheat, barley, and oats that you are too stay away from but when I read it talks about hidden things as well. Like some processed foods.. So I have no idea what I should or should not buy. Can anyone here lead me in a direction (books, or other info )where it is easy too understand and grasp. Do I just look for wheat, barley and oats on the labels, If this is mentioned.. what, then don't buy it? What do they mean by hidden things in processed foods?

All I know is I am allergic too EVERYTHING, even applying my make-up will make my face burn, and turn red. I have never been Ill like this in my life, in fact up until my sons pregnancy which Is when I really think this all started, I thought I was rather healthy :(

My Osteo wants me too do the Candida diet for about 5 months, but I struggle with that too.. No fruit...thats a tough one for me..Is there any books that simplify there information.. something that offers shopping lists, or do's and don'ts too this life style change. :huh:

I would really appreciate any thoughts or help on this

Missy

I am so sorry that you are so ill...celiac disease has so many presentations its hard to diagnose. Many celiacs also have multiple food intolerances. I really hope that you can get to a major medical center where you can be seen by a top credentialed GI doctor. Many MDs dont see alot of celiac in adult patients and therefore are slow to recognize it. Large university med centers are often yoiur best bet for complex diagnois. Good luck!!

missy'smom Collaborator

I'm afraid that I'm unfamiliar with many of the symptoms that you mention but pregnancy/chidbirth was the trigger for me. I'm about the same age as you and until I went gluten-free, wasn't well a day since giving birth. I too was given a strong dose of IV antibiotics and think it weakened my immune system. I caught everything that went around and got the worst case of it ever, over and over again for a year. I started taking an antioxidant formula and that helped alot. But if I stopped taking it I started catching every cold, flu etc. again. It took me another 7 years to find out about celiac disease.

Given the severity of your symptoms I would also encourage you to purse further medical evaluation.

It can be easier in some ways to start with fresh, pure ingredients. If you click on site index on the top left corner of the screen you can find a list of forbidden ingedients. By law wheat is require to be listed. barley is not. So that's more of a hidden ingredient. It can be found in malt and carmel coloring to name a few. If you see wheat, barley or barley containing ingredients or oats do not buy that product. Only certified gluten free oats are considered safe for those with celiac disease and they are not used in mainstream products. If it says, "made in a facilty that also manufactures____", then you have to make a decision about what potential there is for cross-contamination and how that will affect your health.

Good Luck. I wish you health.

marciab Enthusiast

I'm sorry to hear you are having such a rough time.

If you're planning on being tested for celiac disease, you need to be eating gluten. Did your Osteo tell you about celiac testing ? I found out the hard way that once you start feeling better off gluten, you'll never go back to eating it. So accurate testing will be out of the question. <_<

But for right now, I'd start on the elimination diet. You'll need to eat plain chicken, fish, turkey and plain veggies and fruits. Low acidic fruits will be the easiest on you ... pears and apples. And peas and asparagus are easy veggies.

Also No wheat (unless you are going to be tested for celiac), dairy, soy, eggs or corn or anything else you know is bothering you.

I'd add probiotics and digestive enzymes to your diet. For digestive enzymes my GP told me to start eating papaya, mangos and pineapple since I would be needing foods.

I'm sure others will chime in ... Try to relax and take your time learning about all the new foods you've never eaten as opposed to concentrating on all the ones you can't have anymore.

It gets better .... Marcia

Offthegrid Explorer

It is *really* overwhelming at first, and no one seems to understand. I know I felt that way for a long time, and still I meet terribly insensitive and stupid people -- but it doesn't bother me as much now.

You can subscribe to a gluten-free list -- I forget the name of the Web site, though.

I'd recommend writing down a list of basic products you want to buy, and then looking them up on the manufacturer's Web site. Many of the big companies now will state on the Web site if a product is gluten-free. Kraft does not hide gluten. And McCormick will clearly label the spices if any gluten is present.

I'd also go dairy-free immediately, too.

Like other posters said, your best bet in the beginning is to stick with plain meats, veggies, fruits and nuts. If you seem to react to fruit, maybe try eliminating citrus?

Keeping a food diary will help. For me, it sometimes takes 2 or more days to react to something, so you may have to look back a while. I know for others it can take longer to react.

I react to soy, also, but just assumed I was still getting glutened.

happygirl Collaborator

See the list at the bottom of this page: Open Original Shared Link

It includes companies that don't "hide" gluten. If you don't see wheat, rye, barley, malt, or oats on these labels, then it is safe to eat. If it has one of the offenders listed, it isn't safe to eat. Takes the guesswork out of label reading.

Hopefully this will help some.

MCKMNL Rookie
See the list at the bottom of this page: Open Original Shared Link

It includes companies that don't "hide" gluten. If you don't see wheat, rye, barley, malt, or oats on these labels, then it is safe to eat. If it has one of the offenders listed, it isn't safe to eat. Takes the guesswork out of label reading.

Hopefully this will help some.

That List is fantastic.. OMG Thank you so much!

Thank you everyone for your warm thoughts and help..I really appreciate it :)

Missy


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



Celiac.com Sponsor (A8-M):



Crystalkd Contributor

It's okay to be overhelmed. I was. My allegeies almost cost me my life as well. I'm not sure what my trigger was. I have mild Cerebral Palsy as well and a surgery I had could have set it off. It's okay to grieve. I did!!! It's hard! I found the easiest thing to do was go back to basics and add things from there as I learned more about what I could and couldn't have.

wowzer Community Regular

I know over the years when I had my itchy spells, it seemed once I was like this, it took forever to get back on track. Things that normally didn't bother me did. I hope that you are feeling better soon.

DM11545 Newbie

Hi Missy ... so sorry to hear about what you are going through. I would like to chime in on the candida problem and maybe offer my thoughts. Candida can take on a life of its own and has a whole host of tummy (and other) symptoms that can be somewhat similar to celiac. Antibiotics are definitely no help for candida and cause candida to flourish. I had a really bad case of candida a couple of years back and it seemed like I would cycle through diahhrea and constipation in the same day (the same hour sometimes) with all kinds of other "fun" symptoms. I cut out all sugared foods (pop cookies etc.) and milk. I then started taking acidophilus religiously before I went to bed and during the day. I always bought acidophilus from GNC as I always like their quality and I usually took more (sometimes 2x/3x) than what was recommended. It took a few months but it cleared up incredibly well and I no longer have the bad symptoms that I had back then. I continued to take acidophilis for a couple of years after.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748

    Lunaluv
    Newest Member
    Lunaluv
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. 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. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.