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Help!why Am I Feeling Bad Again?


SanteeBay

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SanteeBay Rookie

Hi all,

I am getting a bit discouraged here. I have been gluten free for 2 months now. I noticed huge improvement belly wise in just a matter of a week and the bone and joint pain was considerably better. It now seems I am having more bad days than I am good. I have not intentionally ingested any gluten whatsoever. My belly troubles are okay but my bone and joint pain are getting worse along with fatigue. Is that normal to have a set back after going gluten free? Headaches are coming back also. I don't know if I am intolerant to any other foods. Does anybody have any ideas? Thank so much.

Melanie


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Kaycee Collaborator

Melanie, I felt the same as you.

The beginning of the diet for me showed wonderful improvements, and I thought great, so easy, but somewhere along the line, a couple of months in, I was sliding back. I got a bit depressed with that, as I was sure I had been going down the right track with eating.

For me it was a mixutre of glutenings (I was not too aware of what I could eat as things looked gluten free, but you have to look beneath the surface and between the lines of all lables), other intolerances and healing.

It could be other intolerances, like peanuts soy and or dairy. There is no easy way of figuring this out, but eliminating them for a while could show improvements, and then bring back the items one at a time to see what you might be reacting to. It takes time and is not a quick answer and you will need a lot of patience and perserveance.

My major problem later on was the supply of water I was drinking at work. I know that sounds odd, but it might just have co-incided with me having healed, but the change was just like in the beginning of the diet when I noticed the most improvements.

Good luck, and I hope it is not another intolerances, as they are a pain as I avoid all peanuts and soy.

Cathy

Nancym Enthusiast

I think gluten was masking some of the other food issues I had, like with dairy. Now I listen very carefully to my body. When things start going haywire I know I have to tweak my diet. For instance, eating too many nuts or seeds gives me diarrhea. Just start experimenting and see if you can't figure out what it is that is causing you issues.

LisaJ Apprentice

Hi Melanie -

I also had this same problem. Finally figured out it was dairy - which is strange, because I don't ever remember having issues with it before I went gluten free. Dairy seems to be a very common problem around here :)

Hope you feel better soon

spunky Contributor

Just ending my first year gluten free, I can say the first half of that year went like a wild roller coaster ride: good, then bad, then good, etc. It seems anything can happen. I never figured it all out, but I am 100% better now, and even my "bad" days are really so much better than any few good days I used to have. Sometimes now, doing the simplest thing, walking the dog, for instance, I just sigh at what relief, how good I just feel all over by now.

But during the first several months I was pretty much up and down. I continued finding on and off tiny sources of possible glutening, here and there, and got more and more diligent. Also, I avoided (and still avoid) dairy, casein from "non-dairy" products (one of the big allergens in milk), and never did cut out other possible suspects, such as soy, nuts, etc., but I did cut way back for a couple of weeks at a time on and off.

I think it's possible that new intolerances may surface in some people during the first few months going gluten free. It seems these may be temporary, or may be forever: you just have to give it time and see what happens. Also, as you go along you may find new sources of gluten still sneaking in. Things didn't really start to predictably calm down with me until the 7th month. By the 8th month I took a chance, got sick and that lasted the whole 8th month and ruined it for me, and from then until now I have felt really great most days. I would give it time, watch everything: foods, additives, shampoos, evelope flaps, any possible source of gluten, and then keep an eye out for other foods that might seem to be bothering you right now. I found probiotics helpful during this time too.

SanteeBay Rookie

Thanks everybody. I thought you would all say to eliminate foods to see if that made a difference. I am clueless on which ones or one to start with. I had no idea that I even had Celiac! I went to the doc for fatigue and anemia! Do you know if I have other intolerances if they would make my body hurt even though my stomach feels great? It just seems strange that my stomach is doing so well yet it is my joints and bones are the ones hurting? I did have someone else tell me to take probiotics. Do you know if the ones they sell at Costco are okay? I don't think this is a gluten thing though because I am extremely careful in reading ingredients and never cheat. I was feeling so great when I first started I said that I would never eat gluten on purpose again. Now though that I am back to feeling like crap most days I am so tempted to go and have a Round Table Pizza!!!!!! YUM!!! Have you all tried the Kinninnik? pizza crusts? I bought some the other day but haven't tried them yet. Thanks for listening.

Melanie

Ursa Major Collaborator

Melanie, I find that all lectins cause me to have joint pain and extreme fatigue (not necessarily bowel and stomach issues at all, other than rice). And salicylates give me body aches, and also fatigue. So, you might want to eliminate all lectins for a while to see if it will help your joint pain.

For more information, follow the links in my signature. I hope you feel better soon.


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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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