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

Frustrated And Need Help!

hollyhs

By hollyhs
in Food Intolerance & Leaky Gut

Recommended Posts

hollyhs Newbie
hollyhs
Posted

Hello All,

AGGGGGG! I am so frustrated! I was diagnosed with Celiac about 8 months ago and have been faithfully following a gluten free diet. I had blood work and an endoscopy last week and my anti-bodies are now negative and my intestine looked good, just a little inflammation. So, yea!

My frustration is from the other food sensitivities that have come about! I think I've had maybe 5 good days in the last 2 months! My symptoms are very swollen, red itchy patches around my eyes and jawline, GI discomfort, joint pain, dull headache and just feeling plain crappy. First I thought it was eggs, so no eggs and I felt good for a while then my symptoms returned. So....I thought dairy, good for a while then bam, so corn I thought, then nuts and so on and so on. I am so frustrated because I don't know what not to eat anymore! I kind of keep a food diary but often there is not any one thing that I can identify causing my symptoms. I guess my question after all that is what can I eat that will most likely not be allergenic so I can do some food challenges and figure out what keeps getting me. Shoot, the gluten part of this whole thing was the easiest!

Thanks for letting me rant and for any suggestions!

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

I don't have other food issues (knock on wood), but many here have issues with soy.

Others will post.

gadgetgirl Newbie
gadgetgirl
Posted

Besides gluten, I also have issues with caisen (dairy), soy, yeast, almonds and coconut (even the oil).

Are you taking any medications or supplements? I found out the hard way that the first brand of fish oil capsules I bought contained soy :(

If it is any consolation, it took me about 18 months to figure out all my intolerances. Patience, and a food diary, is the key.

ShayFL Enthusiast
ShayFL
Posted

I HIGHLY recommend looking into the SCD (specific carbohydrate diet). I was in your same boat and am doing MUCH better. The SCD helped me a lot. I dont follow it 100%, but very close. I ate corn the other day with no real issues other than I can tend to overeat it in the form of corn chips. I am also now able to tolerate butter and kefir.

On the SCD it allows nuts in the form of nut butters first, then nut flours and not until healed whole nuts. It is an "easy to digest" diet.

www.pecanbread.com

Originally designed for autistic children it is helping A LOT of adults with food sensitivities. There is a thread in here on it too.

Wishing you well soon!

AliB Enthusiast
AliB
Posted

This kind of backs up the thought that rogue bacteria is behind a lot of our health issues. I have this feeling that the little beggars, when deprived of their main food just turn to a different one. Only by avoiding carbs per se can we have any hope of conquering them!

When I started gluten-free I also dropped dairy. Then I found that I was reacting to virtually ALL carbs. Interestingly the original Celiac treatment back at the end of the 1800's was to remove Carbs from the diet. It was believed that the problem was carbohydrate in most forms. The treatment proved to be very successful and was used for decades before they decided to run with the Gluten 'thing'. For many of us though, gluten is just the tip of the iceberg and we have issues with a lot of other foods, mainly carbs, and our reactions to other foods may well just be due to the out of control bacteria being antagonised by them.

I too am following the SCD and slowly getting better (it would be quicker but I am not as disciplined as I should be!). If you suffer with gas and bloating after eating certain foods then you can bet your bottom dollar that the bacteria is having a field day.

The other issues you are having are almost certainly triggered by bacterial reactions to foods and the toxic by-products that result.

Because the SCD removes the trigger foods from the diet and encourages the replenishment of good bacteria in the gut it saves the hassle of trying to figure out what is causing the problems. Some still get problems with odd foods for a while but eventually it sorts itself out.

I had a problem with eggs initially but as my gut has started to heal and I am beginning to get the beasties under control I can now eat eggs without any problem at all as long as they are well-cooked.

There is a struggle going on in your digestive system - it's you or them and they are desperately trying to get, and keep the upper hand. The only way to win is to make sure you are feeding yourself but not feeding them!

hollyhs Newbie
hollyhs
Posted
  • Author

Thank you all. I think will give the SCD a try........it seems to make sense. Have any of you with dairy issues tried the SCD yogurt successfully?

kdaley Newbie
kdaley
Posted

You might want to consider fat intolerance. Celiac's can and often does destroy the gallbladder - it did mine! You need a certain amount of dietary fats to absorb the fat soluable vitamins (so don't eliminate fats completely). However, if you notice more GI discomfort in the late afternoon/evening, a lot of smelly gas, a pain under your first right side rib (just above your stomach), perhaps some pain in your back directly behind that area, and some right side shoulder pain - you might consider that it is your gallbladder.

Kelly

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

They are backordered on the GIPro yogurt starter that SCD recommends. I think some are using Kirkman's. I found an acidophilus supplement that makes decent yogurt. But I am using goat milk kefir right now. A local dairy produces it from raw goat milk. It has a strong bite. But it is helping me and I do not react to it in anyway.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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.