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

2 1/2 Years Later Still Not Absorbing?


KrazyKick

Recommended Posts

KrazyKick Newbie

Hello,

I hope everyone had a safe and pain free holiday. I am just looking for suggestions on how to move forward in the goal of health. I am an avid reader here but rarely post. Now I need to.

I learned 2.5 years ago that I had celiac plus food allergies to: eggs, casein, tree nuts, peanuts, and, avocado. Although I have been glutened in the past my diet is the cleanest I know how to get it. I buy all my produce from a CSA (direct from the farm) that is organic so I also eat seasonally. I get all my organic, 100% grass fed meats directly from farms. I eat rice pasta and wraps and a very few safe products from the grocery stores. I workout and have a balanced stress free (almost, lol) life. The one thing I don't do that I want to is take a probiotic. I don't know which one to take because I seem to not even absorb my multi vitamin even though it is gluten-free. I can't find a good doctor to save my life (literally).

I am NOT getting better. My outrageous symptoms did get better within the first year but I have been unable to move past that point. I spend all that time and $ on good food I'm afraid is being wasted. Is this my life forever? Is there something I am not doing that I could be doing? What harm can come of STILL not processing my food in my body correctly?

Just a touch sad today and looking for ideas...


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



Celiac.com Sponsor (A8-M):



frieze Community Regular

your may need a digestive enzyme more than probiotic..Also, what are those "few, safe, products"? Around here i see it recommended to stay totally unprocessed at first, quite a few don't do so well with "gluten free" processed foods. Also, what about dairy? good luck.

nvsmom Community Regular

I'm sorry you're not well yet. :(

It is possible that there is something else wrong. I personally have hypothyroidism and many of the symptoms overlap that of celiac disease. My thyroid meds aren't ideal at the moment so I have a lot of symptoms that I would have mistaken for celiac if I didn't know better. Making a list of symptoms and googling them (and seeing a doctor too i guess LOL) might turn up something else that can be treated.

Best wishes to you.

KrazyKick Newbie

your may need a digestive enzyme more than probiotic..Also, what are those "few, safe, products"? Around here i see it recommended to stay totally unprocessed at first, quite a few don't do so well with "gluten free" processed foods. Also, what about dairy? good luck.

I can't have any dairy, casein is the protein of all dairy :( The few safe products I have are usually canned/dried beans, lentils, quinoa, gluten-free soy sauce, and sardines/tuna. Are there more than one kind of digestive enzymes? Is there a brand everyone seems to tolerate best?
KrazyKick Newbie

Thank you. I am thinking something else might be wrong too. I have had my thyroid checked-came back fine. I have a few over use injuries (from working out) or that's what my doc thinks. My PT (phycial therapist) thinks it might be something more like RA because I am not responding to thepary. But that has nothing to do with digestion right? My head is spinning.

GottaSki Mentor

Hi KrazyKick-

I know the last thing you want to do is remove more foods. I had improvement with digestive symptoms my first year gluten-free, but other symptoms worsened until I removed all high lectin foods at once. When we remove gluten we often replace with others that can be equally harsh on a leaky gut.

Given your problems with some other proteins that fall into the groups of food with high lectin count - you may want to look into them.

Let me know if you have questions - there are two of us at least on the forum that have found a connection between lectins and healing.

Hang in there - keep asking questions and pushing your doctors to run all possible tests - it is possible to solve our individual puzzles, unfortunately it takes time.

KrazyKick Newbie

Wow I sure do have questions. I was a little alarmed to see so many of my current issues associated with high lectin foods and how many foods I can't eat already on that list! One list of high lectin foods say no mushrooms other ones say you can eat mushrooms. I would love to try this but I am having trouble finding a reliable list of foods to avoid. I did read up and I understand how there is a level of lectins in almost all food so the varied list I get but I do need somewhere to start. So far I have this: no eggs, sweet n hot peppers, tomato, potato, eggplant, beans including soy, nuts, gluten, dairy, processed foods.

Rice is a grain but is it a high lectin grain?

I also bought some digestive enzymes. I am feeling hopeful again :)

Thank you everybody :rolleyes:


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

I went the strict route myself. I am not suggesting you do this strict of an elimination -- just letting you know what I did - there is a lot of info online about elimination diets - it is best to read as much as you can and then make your plan. I think it took almost a month for me to map out what I was going to do. For me this was the best route as I had tried for over a year to remove one food or food group at a time with food/symptom log that never produced strong conclusions. With hindsight it made sense that I couldn't figure it out because my meals had several items I was intolerant of so removing one at a time didn't make much difference.

No Grains - including rice -- white rice has a lower lectin content than brown

No Dairy

No Legumes - including soy, beans, peanuts, peas

No Nuts

No Seeds -- Quinoa is a seed that has similar protein structure to grain with high lectin count

No Eggs

No Nightshades - including potato (sweet potato/yams ok), tomato, eggplant and peppers (all except black pepper corn), paprika and spices mixes with chili peppers

I removed them all for about a month then trialed each individual food (not group) with at least three days between to log reactions. Soon I had to only trial foods on Fridays so I didn't miss work as I was having strong and varied reactions to almost all high lectin foods.

dilettantesteph Collaborator

I'm sorry to have to say this, but I have to agree with the person who thinks that it might be the few safe products. I am a super sensitive celiac, and I have problems with some of those products. I also have problems with some farmers. I need to check with them about their farming practices. I think that the use of wheat containing slug and cricket bait have caused problems for me as well as wheat straw mulch.

The thing that helps me the most is to keep a food/symptom journal. I vary my diet by only one new item per week to make it easier to figure out what might bother me. If I am having symptoms currently I eliminate and re-add on the same schedule to figure out what is going wrong.

I hope you feel better soon.

KrazyKick Newbie

Thank you. I have kept a food journal for 2.5 years :) Didn't tell me anything since I have that issue every time. I won't "really" know what the cause is but I don't see any difference between lectin avoidance and elimination diet.

I do have good news! After one day of lectin diet I had a normal digestion this morning!!! Been a LONG time since that happened. Why exactly...not sure. I know things are looking up and that makes me happy. My digestive enzymes came today so I began those today too. Probiotics are on the way also.

So in a way, I won't know if it was corn or soy or what until I begin to work them back into my diet after 30 days. I know it's not the veggies though, at least not the ones I had yesterday from my farmer. Good to know even those can come into contact with wheat. For crying out loud, what doesn't?? :)

Now I'm just hopeful tomorrow morning goes as well.

Thanks again!

dilettantesteph Collaborator

I do have good news! After one day of lectin diet I had a normal digestion this morning!!! Been a LONG time since that happened.

!!

Sounds like you are on your way. I hope things continue to go well.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,033
    • Most Online (within 30 mins)
      7,748

    davidvibezb
    Newest Member
    davidvibezb
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.