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 Celiac.com!
    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...

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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?
Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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:

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...