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

Recent Dx, Better But Still Troubles

michellehunt

By michellehunt
in Coping with Celiac Disease

Recommended Posts

michellehunt Newbie
michellehunt
Posted

Hello everyone-

I have been gluten free for about 6 months. I have had a few slip ups, one resulting in me passing out cold and getting a nice bump on the head and a trip to the ER.

I have been getting sick again recently with the loose stools and gas pains. I am thinking maybe I have other food allergys.

I haven't had the biospy, just blood work confirming the celiac disease. I was already off wheat at the time and only ate gluten one day before the test and I am a bit surprised it came back positive from what I have read.

My blood work in the beginning of this journey showed me as having lupus and RA. I also have a positive ssa and ssb, so the Dr. always asssumes all my problems are the lupus. From what I have read I may not really have lupus as the celiac disease and food allergys may cause this result.

I have had no "allergy" testing and have not seen a nutritionist.

I just don't feel like spending another 10 years and thousands of dollars I can't afford to only get part of the answers.

I lost over 90 lbs. before my DX and have managed to gain 15 back this year. I feel weak alot and lightheaded sometimes, I try hard to get in the habit of taking vitimans and don't know what else to do.

Any advise would be appreciated.

Thanks

Michelle

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

Celiac.com Sponsor (A8-M):


pamelaD Apprentice
pamelaD
Posted

Hi Michelle,

The best advice I can give you is to eat very simply. Stay away from processd foods and anything else you suspect might be giving you troubles (soy, corn, dairy, etc...).

When I was first trying to get back on my feet I ate a lot of rice (and cream-of-rice) and bananas (drizzled with honey for a few extra calories), poached chicken (drizzled with a little flax oil for omega-3s), poached or fired eggs, potatos, etc... I jokingly referred to this as my 'white food' diet! But nothing else sounded palatable to me at the time.

Not a lot of vitamins, but it's important to get the calories and be gentle to your gut at first.

Then after I started feeling better, I started adding in veggies (well cooked), dairy, and fish (salmon is esp good for you).

There is so much talk of gluten-free bread, donuts, cereal, etc... but most of it is really junk food just like all the non-gluten-free processed stuff!

I also take a Centrum chewable vitamin with lunch every day.

Good Luck and feel better!

Pam

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Michelle,

Sorry to hear that you still haven't gotten your health back (I know how you feel!!!!)

When you said that you were only eating gluten again for one day and the test still came up positive, the first thing that I thought of was that you were somehow still getting glutened all along by something hidden and that's why you still tested positive after being gluten-free for 6 months.....

Have you checked everything? Not only food, but vitamins, minerals, supplements, medications, shampoo, toothpaste, lotons, soaps, etc.? All can possibly contain gluten. Have you gotten your own utensils, toaster? Silly me, before I joined this forum, didn't even realize that using the same toaster as everyone else was contaminating my gluten-free bread BIG TIME!!! Also, over the counter medication are tricky too. I thought for sure I was totally gluten free until I found out that the Gas-X Chewable Tablets I was taking for the gas (and I was eating those things like candy!!!!), actually contained gluten! (the softgels are okay for us....). It usually takes a really long time and lots of reading to really weed out all of the gluten. Do you lick envelopes at the ATM? Do you know that the glue sometimes contains gluten? Same with stamps....

Do a complete mental checklist of everything that even comes remotely close to your mouth. That's the best way to make sure there isn't anything hidden anywhere......

Hope you are feeling better soon!

Karen

Guest nini
Guest nini
Posted

I agree that you have to eat simply for the time being and double, no triple check EVERYTHING that comes near your mouth to make sure it's gluten free, YES this includes kissing somone on the mouth that has been drinking beer or eating gluten foods and hasn't brushed their teeth.

Stick with foods that are mild and naturally gluten free. Potatoes, Rice, baked chicken, baked fish (NO IMITATION FISH), applesauce, bananas... stick to that for a while till you start to feel better, take a good multi vitamin, check to make sure they are gluten-free. Stay away from sodas and limit coffee intake for a while. Limit dairy foods, you may need to eliminate dairy while your system heals, stay away from spicy or acidic foods for now, also, avoid high fiber foods for a while until you feel better and then introduce fiber GRADUALLY.

good luck and keep us posted

Carriefaith Enthusiast
Carriefaith
Posted

Casein (the milk protein) intolerance is common amoung those with celiac disease. If you think that you may have another food intolerance I would try elminating casein for a few weeks and see how you feel. I am gluten and dairy free and don't mind the diet at all. Some other common food allergies are soy, corn, egg, and nuts. Also, maybe try eating more fresh foods instead of processed foods. I've been eating a lot more fruits, vegetables, and meats and I find that I am eating less and staying full for longer time periods. If you need any meals ideas or recipes, just ask!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      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
      Protein or fat?

      By Scott Adams · Posted

      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
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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.