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Your Bowels Are Like Berlin Post War


alesusy

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alesusy Explorer

That's what my Gastro doctor told me today when I complained that three months and a half gluten-free, I still have- often -  bad or very bad days. "Three months is nothing. You haven't even started rebuilding yet, you're just moving out the ruins" he said.

 

He also said I might have other problems apart from celiac, of course, but we cannot start understanting if I do nor sorting them out until my gut is better (including testing for other allergies). And that the key word is Patience. And that I certainly have to eat simple things, avoid processed foods and anything which patently does not agree with me, and that I have to eat in a good way if possible - not wolfing my food down nor eating in front of my computer if possible and most certainly not having dinner just before going to bed because that's super work for my feeble gut just when he would like to go to sleep as well (it's definitely a "he" for me), so that obviously I'm getting up tired in the morning. And that possibly some of my problems might not go away, and then we'll have to investigate why, but we cannot do that before my villis are back to normal.

 

And that in his experience, for an adult, it might take anything from six months to 3 years, but more often between 12 to 18 months. Besides, he said, we don't know how long you've been celiac - how long the condition has worked, that is - before I started having symptoms: it might be some months, it might be several years. Basically, having destroyed villis (I'm classified as a 3-B) does not enable us to understand in how bad a shape my gut actually is.

 

As you all always say to newbies: hang in there, it will get better. I'm hanging, guys... I just wanted to share all this with you. I particularly liked the metaphore:-). He also said something about having to rebuild the Berlin Wall (to stop the leaky gut) and I didn't make him notice that he was mixing up his historical periods... It's hard to be patient, but in a way, it's nice to know that it just takes time.

 

(he also said that yes, it is possible that someone might be sensitive to gluten under 20 parts per million, in rare cases, but that if I'm having allergic reactions it is more probably to something else but that's hard to sort out until my gut feels better. So I'll keep my food diary and eliminate everything which looks suspect. It' going to be a long road, babies...)

 

a.


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GFreeMO Proficient

Thanks!  That is exactly what I needed to hear today.  

Celiac Mindwarp Community Regular

Smart Doctor. I am a fan of the mixed metaphor. I especially like to get hold of wrong end of the stick and proceed to beat about the bush with it. Luckily you doc doesn't.

Good luck with healing (not sure if I can squeeze a reunification reference in here)

Mw

Weeber47 Newbie

I appreciate this post. I've only been gluten free completely for just over a month, and I feel the same with only a little added energy. On particularly bad days I wonder if I have been glutened or if I am doing wrong. I have another doctors appointment next week and was going to bring that up, but this helped me realize this might take time. I guess I am just a little impatient.

CaliSparrow Collaborator

Excellent post! Thank you for passing on your doctor's advice. He sounds like a knowledgeable doctor. Waiting to confirm the unknowns until after healing is wise and I'm going to heed his advice. It seems very sound.

Cali

*corrected misspelling ;)

alesusy Explorer

What I'm trying to do is:

I keep a food diary

I don't drink alcohol at all (if I'm out with friends I might try a quarter of a glass but no more than that)

I have almost entirely eliminated coffee and tea, but also Coca Cola and drink orange juice for breakfast

I'm trying to have very little processed food, I bake my own bread and muffins

Non gluten pasta in limited quantities, quinoa rice etc

Lots of fresh fruit and vegetables, simple protein food (chicken, beef, fish; parmesan cheese on pasta because I'm lactose intolerant - for now? - but parmesan when seasoned has no lactose)

No dairy (I'm intolerant)

 

In restaurants I explain everything and typycally eat grilled meat and roasted potatoes, maybe some of my own bread

Travelling is the worse because I do bring stuff with me but it must be processed food (crackers and the like) and I have to rely on apples and bananas....

 

alessandra

dsr1 Newbie

Thanks for the info alesusy.

I have been on a gluten free diet for 21 months and thought I had 'cracked it' but for the last 9 months my old symptons have returned. My life once again revolves around the nearest loo! This forum is a blessing as I have learned more about my condition from fellow sufferers than any visit to my local doctor here in the UK.

David


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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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