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Before & After Cd Diet


Guest LuvtoLaff06

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Guest LuvtoLaff06

I was diagnosed last November with Celiac Disease due to symptoms of chronic diarrhea and weight loss. Confirmed through blood tests. I started on the diet. After one month I was sickly and depressed. My nails turned a grayish tint and became weak- easily splitting/breaking. My hair stopped growing completely. I was constantly starving!!! After almost 2 months, I gave up! I started eating normal again and now, 6 weeks later, my nails are white again and strong, my hair is growing, I'm slowly gaining back the weight, and have lots of energy and no longer depressed. The only symptom I still have is the chronic diarrhea, but I've lived with that for so long that it feels "normal" to me. I feel great!! So, it seems to me the diet doesn't always help! Just letting ya'll know my experience!


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Guest LisaB

Sounds like a misdiagnosis to me, if you have celiac and go gluten free your absorbtion would improve, not decline. Makes no logical sense.

aldociao Rookie
So, it seems to me the diet doesn't always help!

LuvtoLaff,

It does sound not logical. Are you sure your gluten-free diet was a good one? If it was, you should not have gotten the symptoms you mentioned even if you are not gluten intolerant. A gluten-free diet, a good one, should bring health regardless of one's sickness. There are those on this Board who might be able to tell you if you did have a good diet. (I'm still in the process of finding out myself.) Why not post what you ate on a typical day, or days, so that it can be evaluated by others here who have thrived on the gluten-free diet for years?

You mentioned that your only symptoms prior to being diagnosed were chronic diarrhea and weight loss. My only symptoms (I'm self-diagnosed, awaiting results from Interolab) were weight loss and a difficult to define feeling of being neither well nor sick, a kind of fatigue that wasn't severe enough to cause serious problems but kept me for doing many of the things I wanted to do. Though there were signs, very minor signs, of feeling better for the first two months being gluten-free, only now, as I'm approaching the third month, has there been a very noticeable change for the better--more energy. The weight, 2lbs in the last week, is the first weight gain in so long a time that I can't remember the last time I wasn't losing, or remaining the same. I guess the intestine is healing, but it took almost 3 months for any really noticeable results.

I'm not suggesting that you should stay on the diet you were on--there has to be something wrong with it. But it certainly couldn't be because it's gluten-free. What I'm suggesting is that you give it another try after getting feedback on what might be wrong from those here who have the experience to help you in your food choices. If you do have celiac disease and you don't take the necessary steps now to deal with it, it can only get worse as time goes by, especially since, like me, you are mostly symptom free, without the helpful, though annoying, reactions that will tell you that you are doing what you shouldn't be doing. Not if you want health. --Aldo

Laura Apprentice

Did your diet get worse in some other way? It can be hard to maintain a healthy diet when you have to eliminate so many things. Is there some nutrient that you got mostly through foods containing gluten or through something you ate with a food containing gluten that you didn't get on a gluten-free diet?

You don't say if you were diagnosed celiac with blood tests and/or biopsy, so if not maybe you were misdiagnosed. But I still don't see why, given a healthy gluten-free diet, you'd get the symptoms you describe. So you might want to go back and ask your doctor some questions, because neither of the sets of symptoms you describe sounds like anything I'd want to live with.

Guest shar4

Luvtolaf,

I'm sorry that the diet didn't work for you. I was diagnosed around the same time as you and went gluten-free, and have stayed that way. I had been taking iron supplements before diagnosis, and hadn't really noticed an improvement until I started getting B12 injections. I have to admit, I feel GREAT, and am starting to do things that I haven't done in a long time. I feel like I have years of downtime to make up for and I'm working on it every chance I get.

I hope things work out for you, and like some of the others, it sounds like there is something else going on.

Blessings.

Sharon

Guest LisaB
After one month I was sickly and depressed. My nails turned a grayish tint and became weak- easily splitting/breaking. My hair stopped growing completely.

Sorry to say, that is not enough time for those things to have occured in my opinion. I has taken years for that kind of decline even though I was very sick, once going gluten free and when I started to absorb nutrition, things started to turn around and quite quickly, but not that quickly.

It seems to me you would have to be only drinking water for something even close to that to be happening to you, you may have resented the diagnosis but I hope you aren't kidding yourself, your the only one that knows.

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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. 
    • BlessedinBoston
      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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