Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

2 1/2 Years Later Still Not Absorbing?
0

11 posts in this topic

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...

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?
0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,880
    • Total Posts
      919,451
  • Topics

  • Posts

    • Celiac - How many symptoms can there be?
      Hi Everyone I am new here and wanted to see if anyone else is experiencing the same thing I am.  I was diagnosed positive for celiac in 2/2016 via biopsy from an endoscopy.  I was negative for blood work because I self-eliminated gluten 9 months prior; so I guess I had not antibodies register in my lab work.  Prior to 2/2016 I was having symptoms for almost an entire year.  Despite cutting out grains in general for 9 months, I would have a gluten attack at least once a month.  I have had a history of sinus, bronchial infection.  I remember as young as 17 getting sick but I always bounced back and was active in sports and working out.  But in the past year I developed the following symptoms - Sudden desire to pass out, nausea, headaches, heart palpitation, crashing exhaustion as if I was recuperating from the flu, wheezing in my chest. I was bounced around to an allergist at this and was told I was asthmatic and I had food sensitivities to dairy, nuts, corn or corn derivatives (including corn syrup) and grains.  so I cut everything out!  Despite cutting everything out I was still have episodes at least monthly, possibly cross contamination.  In April 2015 I traveled to the Carribean for 2 weeks,  I became very ill with a urinary tract infection, stomach bug and severe back pain with constant fever.  I was treated with antibiotics (Bactrim) for 10 days which did clear up the situation. I came home and dismissed everything to a coincidence.  Six weeks later the GI distress woke me up in the middle of night.  The pain was so excruciating that when I sat on the toilet thinking I had to go, I almost past out from the pain.  I lay myself down on the floor until it subsided.  The next day I contacted my primary and was immediately seen.  She referred me to a GI specialist but the appointment was not until August.  Then 2 weeks before my GI appointment they called and rescheduled for late September.  I saw him and by then I was feeling better; no epsides for almost 2 months.  So we did nothing.... boy did I talk to soon.  Immediately after the appointment I had an attack.  These were the symptoms: Nausea, crashing fatigue (as if I was hit with the flu), diarrhea, dizziness,, loss of appetite,  lower back pain, specifically in the middle; intestinal discomfort and body aches which lasted 10 days!! and abruptly disappeared, thank God.
      . I had to wait to see the GI until 1/2016.  Once I saw him he did labs which were all normal.  He checked my liver, kidney, pancreas, blood count which was all normal.  He also scheduled the endo/colonoscopy for end of 1/2016.  Speeding forward in time....since the Endo/Colonscopy procedures, I had attacks January through March which last 7-10 days each time.  I finally had a break for 2 months and today as I type this I am on day 6 of another episode.  What I wanted to see if anyone has experience the following.  For me each episode is getting worse with the following symptoms: Nausea (horrible), back pain on the left side both in the rib cage (the front and back) at times this pain also gravitates toward my left hip.  I also get diarrhea, bloating, intestinal distress, crashing fatigue and loss of appetite.  What really hits me hard is the rib cage pain that is in the front and back on my left side.  I will be seeing the GI doctor in August; but I am hoping to see him sooner Any input in reference to symptoms is appreciated.    
    • Depression / anxiety issues
      Hi all  10 weeks ago i was diganoised with celiac with blood work and a endoscopy. I have had the worst 2 years of my life that started with blood being in my stool everyday. I have always suffered with anxiety for as long as I can remember but I always just pushed trough it. I then I started having panic attacks, insomnia and major depression that I could not handle, I could not function, I lost my job because I could not leave my bed, I shaked as I lay in bed everyday uncontrollably. I met with a doctor who put me on lexapro (antidepressant) I finally gave in after 6 months and started taking them, they made me worst than I already was so I had to stop after 14 weeks. Fast forward to 15 months later and the symptoms still persists including the bloody stools, I was in and out of hospital every week and told I had all sorts of conditions, then the blood work and endoscopy Finaly discovered the celiac. I have been on the diet now for 10 weeks, the first week my anxiety went away, the horrible knot in my stomach that I have had everyday, the hot flushes, the tingling I had run trough my legs. This all left but only for a couple of days then it came back, the depression also lifted but has now came back, I have been more than strict with the diet, I check everything twice before I eat it, me and the misses have thrown away everything from our kitchen and replaced it with new things. I had my Vitiam levels checked and I'm deficient in b12, Vit D, all B vitiams. It's like one step Foward 2 steps back in tearms of healing, I know these anxiety / depression feelings are not me but I've had them for so long that I can't seem to see light at the end of the tunnel. The couple of days that they left me when incredible I felt human and alive. Just wondering if any of this has happened to anyone else with celiac or gluten intorlance. Any advice or hope In tearms of healing or am I to feel like this for the rest of my life (I'm 28) by the way. Thanks a lot   
    • So I've been glutened....
      That sounds like a plan JMG.  If things aren't working then make a change, hopefully a positive change.  It seems to me we have more noticeable symptoms sometimes after being gluten-free a while.  I made a mistake last night and ate some tuna canned in water.  It definitely wasn't boring.  I usually have more sense than to eat tuna canned in water but screwed up last night.  They canned  it in broth of some sort.  Ingredients say vegetable broth and soy.  Yuck, not good for me.  It sure tasted good though, just ouch.  I am not saying it had gluten in it, but it does have soy and some kind of unnamed veggie monsters.  So it could be soy, or carrots or some other disgusting vegetable that got me.   Not all celiacs have additional food intolerances beyond gluten, but some do.  My gut could testify to that.  Anyway, if you have bloating, cut out all carbs and sugar for starters.  And try peppermint tea or Altoids.  Over here we have something called Pepto Bismol that helps soothe gut pain and another neat thing called aspirin.  And gluten-free beer as needed.  
    • Gluten free apparently not helping entirely
      Jean, Maybe your boss can find you a job in the office for a while?  It's worth asking maybe? It's not easy being on constant travel with celiac disease but it can be done.  Your effort to find safe food is going to be harder than most but it is not impossible.  But if you can't manage it you should really think about getting a non-travel job.  Your boss may be willing to work with you on an office position, even if it's temporary.  That would give you some time to look for a local job and also eat a safer diet. It's really up to you to control your diet and make sure it is safe.  If you can't figure out how to  do that while traveling you owe it to yourself to figure a way out of the travel. Celiac disease isn't always fun and games.  Not always.   I hope you find a way to improve your circumstances.
    • Gluten Free baby food pouches?
      Anyone know of any baby food pouches that are gluten free?  We love to have them on the go for our kids (not just baby), but I have no idea which ones to get now!  We used to get Meijer brand and Plum.   Thanks!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,922
    • Most Online
      1,763

    Newest Member
    Barsch
    Joined