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Still Bloating And Cramping After Glutten Free For 7 Weeks


minnow

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minnow Newbie

Can anyone offer me advice on how long it took or takes to feel much better after being diagonosed with celiac. I was diagnosed approx 7 weeks ago and have tried to be very deligent about being gluten free. I felt immediately better the first 2 weeks then I believe I was contaminated somehow and was very sick for 3 days. Felt better againbut now am experiencing bloating and cramping again almost like before I began the gluten free diet. My Father got tested and has all the genetic markers for celiac and many many signs but refuses to admit he has celiac. My whole family that is parents brothers and sister have been very unsupportive almost angry that I was diagnosed. My own family has been the opposite my husband and 4 kids have been great they just forget like I do and it is hard to change your whole life after 45 years. Anyway, is it normal to feel better then worse and will the bloating and cramps ever go away? I can't really rmember what it feels like to not have pain in your stomach. I worry about cancer or something worse but my Dr. did the blood test for c ancer a cat scan and ultrasound so I quess I am covered. Any help in any of these questions would be sooo appreciated. I just don't know anyone who can say to me oh that is normal and this might happen but hang in there or something encouraging. Also my Fathers mother my grandmother has been anemic her whole life and for the past year has been losing weight and has to have blood transfusions every month. They have tested her for everything and can't find anything wrong. She has also broken several bones this year. She has always had stomach problems and they won't test her for celieac. Everyone acts as if I have done or said something wrong and I am the strange weird one. Sorry for the ramble but please help.........


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YoloGx Rookie

I was just reading that massive doses of pro-biotic bacteria does a lot to heal celiac. If you can get the enteric coated ones and make sure they have a number of strains. Also eating kefir or yogurt if you can tolerate them might help and/or cultured live sauerkraut.

Bromelain/papain caps and pancreatin digestive enzymes could really help too.

I have found taking marshmallow root and/or slippery elm will also help heal reduce inflammation and soothe the lining of the gut.

Using Dandelion root or milk thistle caps would be good too. Avoid tinctures due to the alcohol.

Consider too you might be encountering more hidden glutens. Or having more food sensitivity problems to other things.

Bea

curlyfries Contributor

Have you eliminated dairy? I, too, started feeling good at first then got worse again. Many celiac's can't handle dairy until they have had plenty of time to heal. For me, it felt just the same as being glutened.

Keep a food journal and keep reading this forum. When I first started, I read tons of old threads. The ones with "newbie" in the title would be a good start.

Hang in there.....it'll get better ;)

Lisa

ShayFL Enthusiast

I can tell you that you are not alone. I am around 8 weeks in and I have ups and downs. Had a really bad week last, but feeling pretty good today. And no migraines in the last 6 weeks!!! Yeah!!!

Hang in there....it is normal to not heal on a constant incline.

minnow Newbie
I can tell you that you are not alone. I am around 8 weeks in and I have ups and downs. Had a really bad week last, but feeling pretty good today. And no migraines in the last 6 weeks!!! Yeah!!!

Hang in there....it is normal to not heal on a constant incline.

Thanks for your encouragement. I am trying to be positive it is soo unknown waters I am going all alone it is hard to know what is normal. thanks again Mindy :)

minnow Newbie
I was just reading that massive doses of pro-biotic bacteria does a lot to heal celiac. If you can get the enteric coated ones and make sure they have a number of strains. Also eating kefir or yogurt if you can tolerate them might help and/or cultured live sauerkraut.

Bromelain/papain caps and pancreatin digestive enzymes could really help too.

I have found taking marshmallow root and/or slippery elm will also help heal reduce inflammation and soothe the lining of the gut.

Using Dandelion root or milk thistle caps would be good too. Avoid tinctures due to the alcohol.

Consider too you might be encountering more hidden glutens. Or having more food sensitivity problems to other things.

Bea

Thanks for your advice where should I order the digestive enzymes and probiotics? Is there a web site. Do yoiu have to do this for the rest of your life??? Or do you heal eventually. How long have you been well and how long did it take? Thanks so much for you help. Mindy :)

minnow Newbie
Have you eliminated dairy? I, too, started feeling good at first then got worse again. Many celiac's can't handle dairy until they have had plenty of time to heal. For me, it felt just the same as being glutened.

Keep a food journal and keep reading this forum. When I first started, I read tons of old threads. The ones with "newbie" in the title would be a good start.

Hang in there.....it'll get better ;)

Lisa

Thanks for the info I love cheese soo much but I had gotten off dairy before I was diagnosed but went back on when I was diagnosed so I guess it could be a problem. How long have you been well since you wwere diagnosed?? THanks for any advice and help. Mindy :)


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katebuggie28 Apprentice

Since I have been gluten-free I have been very careful, but I have to do foods one at a time. I am now intolerent to corn, beef and tomato sauces (not tomatoes alone) If I eat any of those things I get cramps etc... I have also found that I can eat american cheese, but not white american. Try ground turkey meat, chicken, fish, potatoes and rice for awhile to see if it gets better. When I first started I thought I was going to starve to death. :) Now anytime I try a new food, and I tolerate it well I get excited! Good luck.

minnow Newbie

How long have you been celiac??? How long did it take untill you were cramp and bloating free?? I am going to try the strict veggies meat thing. What about yogurt cheese is that ok? It just seems like there is not much to eat??? thanks for all your help.. Mindy :)

celiacker Rookie

Mindy, I was diagnosed with Celiac in April and also found I still had the SAME PROBLEMS! I stopped eating dairy -- though I sneak in trace amounts for the milk in my coffee and tea.

It's made a huge difference, and I also added those enzymes, which I bought from Vitamin Shoppe (GNC also sells many kinds). I bought a Canadian kind that has several enzymes in one pill. I take them twice a day.

If I eliminate dairy from my diet entirely, my digestive system is a calm, placid lake. My doctor advised I stay off dairy for the next couple of months so the villi heal. They were quite damaged, according to the endoscopy.

I used to be disgusted by the idea of soymilk, but Silk's unflavored, unsweetened (green carton) soy milk is delicious.

Haven't noticed whether eggs or cheese really affect me - they aren't composed the way milk and yoghurt are. Milk and yoghurt are the worst for me.

Good luck!

Liz

YoloGx Rookie

"Milk and yoghurt are the worst for me."

Shows everyone is different. I can handle nonfat organic yogurt but not any other milk, cultured cheeses or whatever.

Am glad to hear that the enzymes are really helping you. Are you taking pro-biotics too?

Anyone here who also has to avoid all tocopherols in hand creams, soaps, lipstick etc.?? By avoiding them I no longer have the body aches and pains, headaches and strained tendons etc. I used to have. Now I can dig in my garden and just get tired--but no aching joints and no bunched hip and back muscles and no headaches!! Instead of going on 59 I feel like I am going on 39, if not younger.

Bea

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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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