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Can You Initionally Feel Worse?


glutenfreegirl

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glutenfreegirl Enthusiast

Good day

I would never post this any where but here and I am only doing this because I am scared and confussed today..

Is it possible to feel worse before you feel better?

yesterday was my first complete gluten-free day as I was just diagnosed after a year long struggle of suddenly feeling awfull however when I look back now it has been years just very subtle that i never put it all together or knew what celiac was for that matter and I have to say energy wise and bloating I felt much better than before however I had a lot of mucus spitting up from my throat and my nose was draining a fair amount. Could it have been stuck there from the inflammation from the Gluten and now just breaking lose now this AM i am spitting more up and my ears and nose feel fluidy I have been drinking lots of water to try to flush it all out.

Also prediagnosis I was suffering C but yesterday and this AM WOW lots of rumbling and moving down there not D thought is that normal or is somehting else wrong now? I gues I htought I would just start to feel better and better not like this has this happened to anyone else.

I guess I just did not think things would feel worse or have weird things like this happen and I am very scared also noticing my moods off a little feel more sad than yesterday and pressure in my ankles alittle fluidy.

thank you for any advice or help i hate this feeling of fear i thought i would be releaved not scared..


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ShayFL Enthusiast

YES!! I felt worse before better. Think of it this way....anytime you injure your body.....healing can be painful. You stub your toe and it is more sensitive an sore 2 days later. You cut yourself and it hurts while it is healing. Burns are very painful while healing. Your body is healing. So this isnt a bad sign and try not to let yourself think it is. Give it some time....you will feel better!

glutenfreegirl Enthusiast

Hi Shayfl thank you for responding so quickly would it be rude of me to ask what you where feeling when you went throught recovery how did you feel worse and for how long if you remember I hope I am not being rude by asking.

YES!! I felt worse before better. Think of it this way....anytime you injure your body.....healing can be painful. You stub your toe and it is more sensitive an sore 2 days later. You cut yourself and it hurts while it is healing. Burns are very painful while healing. Your body is healing. So this isnt a bad sign and try not to let yourself think it is. Give it some time....you will feel better!
ShayFL Enthusiast

It is the answer that might be rude. :o

I didnt have many GI symptoms before gluten-free. I am mostly neuro. But after I cut it out, I had horrible gas/pains and found myself in the bathroom waaaaaay too much. I was also extremely tired (not normal for me). Moody and irritated for a few weeks. Snappy (also not normal for me) and starving no matter what I ate. It wasnt pretty. But it calmed down after a few weeks and I am still getting better as the days go by.........

samcarter Contributor

Yep---drainage, big time. Your immune system has been working overtime against the gluten, and the drainage is, as my dad so eloquently put it when I was a kid, "the dead soldiers" (white blood cells) left over from the fight. Think of it as a detox. You often feel worse, initially, before you feel better. Without the gluten to fight against, your body can finally work on healing the inflammation.

You will heal fastest if you eat whole, simple foods. Don't jump into gluten-free substitutes for things like bread, crackers, and cereals.

glutenfreegirl Enthusiast

Yes drainage that is a good way to put it :rolleyes:

I feel like i have mucus coming from everywhere!! mylungs my nose and even saw some in my "poop" yes I said it.... I have been peeing tons and feel just down and sluggish and headachey man I htought i was supose to feel better right away but good to know others felt yucky first too...\

thank you

Hummingbird4 Explorer

I wasn't really having symptoms to start with, and after 8 days of being gluten-free, I feel worse. I have bloating, gas, and just feel very blue. Also, I've gained a few pounds that I did NOT need to gain. I'm hoping it's just a transitionary thing, but right now I'm bummed out. I feel your pain, glutenfreegirl. :(


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glutenfreegirl Enthusiast

Thank you all for your support

Hummingbird4 I know what you mean any time you want to chat I am hear we can either complain about how crapy we feel, cheer eachother up or just be....where in the word are you... litterally :)?

I am in Canada

Hummingbird4 Explorer
Thank you all for your support

Hummingbird4 I know what you mean any time you want to chat I am hear we can either complain about how crapy we feel, cheer eachother up or just be....where in the word are you... litterally :)?

I am in Canada

I am in Oregon. Do you have any support groups near you? There is a support group in my area and I believe they are meeting tomorrow morning. I'm trying to muster up the courage to go.

aprilc Newbie

Yes, It will take a couple weeks to totally notice the difference, its been maybe 5 months since ive cut out gluten and I can now say that I do feel the difference

Good day

I would never post this any where but here and I am only doing this because I am scared and confussed today..

Is it possible to feel worse before you feel better?

yesterday was my first complete gluten-free day as I was just diagnosed after a year long struggle of suddenly feeling awfull however when I look back now it has been years just very subtle that i never put it all together or knew what celiac was for that matter and I have to say energy wise and bloating I felt much better than before however I had a lot of mucus spitting up from my throat and my nose was draining a fair amount. Could it have been stuck there from the inflammation from the Gluten and now just breaking lose now this AM i am spitting more up and my ears and nose feel fluidy I have been drinking lots of water to try to flush it all out.

Also prediagnosis I was suffering C but yesterday and this AM WOW lots of rumbling and moving down there not D thought is that normal or is somehting else wrong now? I gues I htought I would just start to feel better and better not like this has this happened to anyone else.

I guess I just did not think things would feel worse or have weird things like this happen and I am very scared also noticing my moods off a little feel more sad than yesterday and pressure in my ankles alittle fluidy.

thank you for any advice or help i hate this feeling of fear i thought i would be releaved not scared..

Shelly D. Newbie

I read this post with hope. I have been gluten-free for about a month and at first I felt energetic and alive, zip--zoom, now I need a nap every day to get through. I had to quit my vitamins because they had de-fatted wheat germ in them (company says they're gluten-free, but I'm afraid to chance it) and I've tried some others but they didn't keep my energy up. My body seems to react with other foods now and I don't like it; bananas are the worst. I'll keep at it though in hopes of getting better.

Jenny (AZ via TX) Enthusiast

I actually felt pretty good the first 2 weeks after going gluten free (although at the time I wasn't totally gluten-free since it was in one of my supplements). Then after about 2 months or so, I'm feeling very tired. I am extremely careful about being gluten-free (changed out the pots and pans, etc). I still get headaches too. But when I look back, I feel better than before I was diagnosed. So I'm sticking with this thing. I don't even think about cheating. Too scared of getting other autoimmune diseases as well as cancer.

So hang in there. The good times are around the corner, I just know it!!! :D

I am also going to get tested for thyroid, vitamin D and hormones.

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    • 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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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