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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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WendyLee

How Many Of Us Assume A Gfd Will Fix It?

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To everyone here: please do not give up...I have been where many of you are...I am feeling better, but it has been a long, uphill battle! My first words...do not be so hard on yourself...second, accept your new normal. I have also had and suggest bloodwork to check your viral levels. Seems like every virus I had ever been exposed to was active in my body. This is because your body attacks the gluten and all the good guys keeping all those other bad viruses are called in to fight the gluten. In my case the viruses attacked my cns causing nerve damage....it has been almost 3 yrs now...steady as she goes...I am not 100%, probably never will be, but I am sure better than I was 3 yrs ago...laying on a couch unable to stand the touch of a sheet against my body, drugged out on narcotics because drs were not treating nerve pain....I still take anti-viral meds, cymbalta and celexa for nerve pain, baclofen for muscle spasms, and a host of supplements; however, I was taking main meds 4 times a day and now down to 1-2 times a day. Recently, cut back on supplements...yes, I still have good days and bad days...but, I rest on the bad days....and it is not always possible, but I know when I have to push through...I will be resting...no more, pushing 24/7...

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I have not posted anything in quite awhile, I guess I just need to vent again. I am have been looking for that miracle of health for 1 1/2 years and according to Gi doc, he really doesnt know why I feel no better. I have been strictly gluten free for this time frame, and according to my last few sets of labs my TTG Iga has been back to normal and my biopsies are normal, at best the only thing that has improved is maybe some bloating, but I still have 24/7 deep aching in my upper adbomen that feels like a constant knot. It hurts so bad that most days I have a hard time functioning and maintaining my job, and pain radiating straight through into my back, and now daily joint pain. Almost feels like someone is pushing their fist into my upper gut or twisting it??

Anyone else with these symptoms? My bloating seems to intensify at times, but the pain in relentless. I have had nearly every scan, xray, 24 hour probe etc. and find it hard to believe that it is related to food ingestion of other intolerances as when I limit them or stop them, it never goes away, it is almost like my gut is permanently damaged, but according to EGD it has healed on biopsy and labs are normal??

I don't get it at all. Still desperate for any type of answer.

Any input would again be helpful? I can't honestly somedays imagine that I can continue to live like this for much longer

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The pain high in your chest and through to the back is very typical of acid indigestion. It can be in the stomach and climb into the esophageal area. Have you looked at spicy or acidic foods to see if they might be the culprit.

I hope your able to resolve it soon

Best of luck,

Colleen

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I really do not eat any spicy or acidic foods, I have had PH probe testing acid and they say everything is fine, this doesnt really burn , it is like someone is putting their fist in my but and I have extreme mid back pain into my right flank, gallbladder is out, last EGD 6 months ago they say is OK, pain is incredible, constant, relentless pressure twisting sensation. Worse than 16 broken bones that I have had in my life, if that puts it at a level. No diarrhea, bowels pretty normal, doesn't feel like a crampy upset stomach

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Okay. Two things I have had in that area are periformis syndrome. This is the muscle that runs across the top half of you butt. Hurts to hold a position long and hurts to change that position. Sacroilitis can go along with the periformis thing. They can both be aggrevated by muscle strain and inflammation. they can also send the pain going up to mid back, that could be a degenerative disk. Sacroilitis alone could send pain down the hips/legs.

Worth some investigation,

Colleen

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I worded that previous post wrong, I meant to say it feels like someone putting their fist through my upper belly into my midback, not my butt, it extends right along the rib cage on the right. I have had a look at my back as the source which was unremarkable with exception of slight thoracic deg. disc at age 42. They even tried to do some steroid back injections with no improvement on three different sets of injections. It feels like it is coming through my gut and then making my midback and ribs very painful. I have even questioned the GI doc about sphincter of Oddi dysfunction, but he say no as my labs are normal. The sucky thing is that almost all pain meds give me such a headache like a bad hangover that it is not worth it to stay on them, or at least I have not been able to find anything to give me relief

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It took me about 2 years gluten-free before I began to feel any benefit; even then I put the "recovery" in part due to the fact that I returned to the UK for a break and responded to a more familiar diet.

3 years on I still have problems, though better. A few things to consider:

First, if you have watery diarrhea you might want to be checked for microscopic colitis (inflammation of the large intestine) which has a strong correlation with celiacs (I have it)

Second, you might have IBS too (my doc says that I also have this!!!)

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So here I am, sitting in my rocker at 0800 in my PJ's waiting for the Ativan to kick in to quell the nausea a bit so I can shower then eat goodness knows what? :huh:

Thanks for passing along your neighbor and your doctor's advice. I also can't do SCD (or GAPS) because it makes me sick, and I'm looking for other options. I have iron overload so I'll skip the red meat, but everything else sounds great (except brown rice...need to do white or I'm in trouble). I've found soaking grains for 24h to be IMMENSELY helpful, and I've gotten really into fermenting my own foods, which really seems to help digestion. (My probiotic pills are in the mail, too.)

One thing about nausea...I had it constantly the first week I went on the GFD. I know it sounds stupid, and you've probably already tried this, but homemade and very strong ginger tea got rid of it for me. In fact, there was just a study that ginger tea is effective for nausea, at least in the context of morning sickness: http://well.blogs.nytimes.com/2012/12/03/really-some-herbal-remedies-can-be-useful-during-pregnancy/

Anyway, apologies if you've already exhausted this. I just sipped on ginger tea constantly (I grated tons of frozen ginger into water, boiled it for 20 minutes or so, and threw in some sugar cubes when I drank it). At the least, maybe consider it as an additive for your smoothie.

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    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
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I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
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      http://udisglutenfree.com/product-category/pizza-crust/
      https://daiyafoods.com/
      http://iansnaturalfoods.com/products/gluten-free-cheesy-french-bread-pizza/
      https://www.geefree.com/collections/all/products/cheese-pizza-pocketshttps://cappellos.com/collections/pizza
      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      https://realgoodfoods.com/productpage/
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      https://www.califlourfoods.com/collections
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      http://glutenfreedelights.com/our-sandwiches/
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
      https://www.simplemills.com/collections/all/products/almond-flour-pizza-crust-mix
      https://julianbakery.com/product/paleo-pizza-crust-mix-gluten-grain-free/
    • My MRI has been clear. They did a spinal tap back in May which was also good.  MS ruled out many times. All my symptoms match Gluten Ataxia, but I don't know for sure since I don't have a dx. However, I DO have Hashimotos so at least going Gluten Free is necessary for that. I go to my Rheumatologist on Jan. 30th, 2018. Can a Rheumatologist determine Gluten Ataxia? If so how long should I be back on Gluten for testing?  Thanks for the heads up on Free and Clear products. I will look into that.
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