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My so-far recovery - FOR PEOPLE WHO FEEL HOPELESS

Phosis
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Phosis Explorer
Phosis
Posted

I just want to chime in. I have not been "officially" diagnosed, as I don't actually see my GI doctor til february to discuss my results. But I had a positive TTG-IGA (negative for any other blood test), near total villous atrophy, elevated IEL, and was also diagnosed with chronic gastritis (no H. Pylori found in biopsy).

I have been on a gluten free diet for a little over three weeks. I am on a PPI for about a week and a half. Before all this, every time I'd go to the bathroom, it was yellow, floating. Tons of bowel urgency. Horrible heartburn and reflux symptoms. Just a slew of discomfort and issues.

I have largely stuck to an AIP, Auto Immune Paleo diet for the last week or so. My sleeps are now better. My stool seems to be normalizing. (doesn't float, back to a brown color.) My stomach burning/discomfort is pretty minimal. I need to eat regularly, or my stomach becomes uncomfortable. For the longest time, I was never hungry - I feel hungry quite a bit more often now. I felt like food was always stuck in my throat (I have esophegeal damage, schatzki ring, and gastritis doesn't help) now that "globus" sensation is very seldom, maybe a few minutes a day.

But the REAL reason I am staying in check and able to recognize these changes is not me - it's my wife. When I have a bad day, or things aren't feeling right, especially in the winter months it's extremely easy to fall into a slump where things seem hopeless. But my wife will bring me in check, and remind me of how many good days I am having - and how the bad times are far more isolated. When I refer to my food journal, I can see how not only has it not been that long since I started to change my habits, only a few short weeks, but how much worse things were a month ago.

We NEED these reminders, especially if you are like me and prone to be anxious. So starting a journal, or posting here and looking at past posts, or even just asking your significant other - how the heck am I doing? Is a huge confidence boost.

I have read elsewhere that just stopping celiac is not necessarily the only step to FIXING autoimmune disorders of the gut. This requires work, and time, and I am an impatient man. But WILL is the other thing. The will to get better, the will to BELIEVE you are improving, and the patience to wait to see those signs. 

Sometimes I have days where I am googling symptoms like mad that I have already googled before...what if it's this? What if they missed something? What if I have pancreatic cancer? And all kinds of other nonsense.

This is the greatest enemy for people like myself with anxiety, so I try to avoid that, be confident in my diagnosis, and stay the course. And there ARE improvements.

Rely on them, and on your loved ones, and be confident.

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Wheatwacked Veteran
Wheatwacked
Posted
On 12/20/2019 at 12:15 PM, Phosis said:

people like myself with anxiety

Good luck with your doctor appointment. Be sure to discuss vitamin deficiency with him. For winter blues I am on 10,000 iu D3. 5 mg a day of Lithium Orotate eases my anxiety and for upset stomach I prefer Alka-Selzer. It neutralizes the acid temporarily (you need hydrochloric acid to digest food) and the aspirin is a mild analgesic/anti inflammatory and to be honest it works as a appetite enhancer for me. Choline clears fats from the liver. Other vitamins and minerals do other things and with no villi and poor gut health you likely are deficient in many. I was/am. Keep the faith. It keeps getting better. 

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Keight Enthusiast
Keight
Posted

Thanks for the reminder! I probably do need to keep a journal. Watching everyone else eat xmas food whilst I nursed a glutoned gut really did my head in. A journal to look back on would help. 

 

I watched Youtube videos on LCHF and keto to cheer myself up. ?

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  • 5 weeks later...
rt-116 Explorer
rt-116
Posted

Love the positivity of this post, thank you! :) I am also extremely prone to getting anxious and getting lost on the internet looking at more concerning reasons for symptoms. However, was diagnosed officially yesterday after biopsy results came back, so feeling optimistic about managing this going forward. Thanks again and good luck to you! :) 

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BuddhaBar Collaborator
BuddhaBar
Posted

That Dr. Google... Don't know how many diseases he told me I had before I knew I had celiac. MS, brain tumor, ALS, bowel cancer, liver disease, HIV etc etc. 

But I remember in the beginning when I had my first symptoms and googled. Ended up at reddit where a guy asked about his symptoms which were similar to mine. Someone replied that he might have celiac disease so I googled that. Thought to myself "no I dont have that" and moved on, hahaha. 

Thanks for the great post! 

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    • Wheatwacked
      Extreme bloating even gluten-free

      By Wheatwacked · Posted

    • Wheatwacked
      Extreme bloating even gluten-free

      By Wheatwacked · Posted

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I, too, like Dr. Hyman.  Also Dr Davis (Wheatbelly) and Dr Amen.  While promoting gluten free, they are not dealing with the level of deficiencies brought on by the autoimmune malnutrition that comes with celiac disease.  You do not need a cleaning, Celiac has done that for you.  You do need agressive vitamin and mineral replenishment.  Those promoting cleanses do not take into account the malabsorption /malnutrition of celiac disease.   It will make you worse.  Your gut biome is changing and without the opiod effects of gluten you are not being numbed.  But you are not getting the vitamin and minerals you need to heal.  It is way higher than the mininmum RDA.  That is the amount it takes for 98% of the HEALTHY population to not show signs of deficiencies.  Good for food service meal plans to keep costs in check.  Healing takes more than sufficient. 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Use sugar or fruit for sweetness, not High Fructose Corn Syrup.  Sugar breaks into glucose straight to the mitochodria to create ATP energy.  No glucose = no energy.  Everything else has to be processed by and overwhelmed malfunctioning digestive system of Celiac Disease.   Since 1970 in the US we have switched to HFCS, )even Schwepp's Ginger Ale), took idodine out of dough conditioner, adopted the modern wheat and limited eggs and meats.  In return, 50% of the US are obese vs. 17% in 1970. 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    • Julie F.
      Extreme bloating even gluten-free

      By Julie F. · Posted

      I have dealt with celiac disease for over 22 years. I was then positively diagnosed with a blood test. I was pregnant with my second child at the time. I eliminated wheat (barley, spelt, etc..) from my diet and as a side benefit, I noticed that the psoriasis on my ankles, elbows and knees had gone away after about a year. I made the connection that eating wheat had been causing my skin problems as well as abdominal issues. Turns out that they are both autoimmune diseases of which inflammation is a symptom. I also deal with dupuytren’s contracture. Not sure if there is a relationship there… am studying that one. Flash forward to near present time and menopause, my psoriasis was coming back even though I was careful in avoiding gluten. I did a bit of research and found new information on the relationship of gut health and autoimmune disorders.  Understanding that my symptoms were somehow food related, I decided to see an ND… Nature Pathic doctor and we did a gut zoom.  This is where they test a sample of your poop to see how healthy your gut biome is.  I was seriously lacking in certain key vitamins, healthy prebiotic factors as well as beneficial bacteria.  I followed an elimination diet and discovered a new sensitivity to corn by-products which I am now avoiding and I follow a regime of supplements and healthy diet (eating a rainbow of vegetables and organic if possible) to help me have a healthier gut biome. The psoriasis is reducing in size and I am feeling better. I am thinking that a gut zoom would be one of the first places to start for anyone dealing with celiac disease… it took me twenty years to figure it out.  I personally believe that factors contributing to my autoimmune issues are due mostly to what I was exposed to. My parents were heavy smokers and I was continually on antibiotics as a child because of ear, nose and throat infections. Antibiotics destroy a healthy gut environment. There is also information indicating that herbicides with glyphosate… that most US farmers use at harvest time (wheat, corn, soy, potatoes…) can be detrimental to gut health as well.   Interestingly, we inherit our own gut health from our mother’s womb before we are even born.  Is this part of the source of our genetic disposition for celiac and possibly other inflammatory diseases? I think that increasingly, more research will be done as medical professionals are making connections to gut health and immunity diseases… reading medical research papers has been challenging, but very helpful. I suggest using credible medical research papers and professional and government agencies when studying up on this relationship, don’t just take my word for it, but I did find the results from my gut zoom to be an invaluable resource.
    • Schellee94
      Extreme bloating even gluten-free

      By Schellee94 · Posted

      I'm having the same issues. Many things are causing extreme bloat. I'm dairy-free gluten-free and I also have to avoid sugar, quinoa, millet, teff, buckwheat, nightshades, alfalfa, all grasses, and chia hurts my joints. Canned garbanzo hurts me. Most beans hurt me. If I make lentils I soak and rinse several times and that makes them edible for me. I seem to be avoiding fresh garlic and onion as well fresh onion gives me a headache. I'm ok on corn, but not most soy. Rice is sort of ok. Then gluten free oats are ok if raw (not cooked, overnight oats are a good choice) . The list keeps growing and so does the bloat. I'm the same weight I was 2 years ago and much bigger in my arms and my belly and back. I'm looking at trying Dr Hyman's cleanse suggestions, and having a good amount of steamed cruciferous vegetables, as a mainstay for awhile. But it's pretty pricey for organic. I've been making my own bone broth but I cook it a lot longer so that I can get nutrients out of the bones not just the meat. This broth has helped me tremendously even though I would prefer not to have much meat it seems I really need it right now. I cannot eat pork it makes me feel poorly and I can't eat very much red meat for the same reason. If the eggs are raised properly I can eat the yolks and only sometimes eat the whites.  I hope this is helpful to highlight some triggers you might be experiencing yourself. There are some other posts here on the forum that highlight digestive enzymes and clean probiotics, as well as lectins. I'm going to look into that.
    • trents
      Extreme bloating even gluten-free

      By trents · Posted

      Some studies, with admittedly small sample sizes, show that about 50% of celiacs react to the protein casein in dairy the same way they do gluten. Can't find the NIH article I'm looking for but this one basically makes the point:   
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