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pathpawb

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pathpawb Newbie

Hi Everyone,

I am new to this site and I have been pretty sick and I don't know what to do. For the past 2 weeks I have had severe abdominal pain and diarrhea and I have been unable to eat ANYTHING because when I eat, the pain gets much worse. I have celiac disease and I have already lost 10 pounds with this. I also have bloating and I am very tired. I talked to my GI doc today and he said you don't have pain with celiac disease!! He said I needed to see a gyn doctor. So I called my gyn doc and he said to cal after my next period ended to see if I had a cyst. SO I called my GI doctor's office back and they said they will see me tomorrow. I feel like no one is listening to me!! This pain is real and I feel really sick!! DOes anyone know what I can do to help this situation? WHat can I tell my doctor to make him listen to me? Has anyone else had this type of problem? Please help!! Thank you!


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MELINE Enthusiast

Hi there...

I am sorry that you have all these symptoms. There is an idea why you keep having them....maybe you have some other intolerances...Most of us can't eat casein or lactose. Have you checked that? Or is there any chance that you gluten yourself by accident?

To make you feel better, I have the same problem with you and I am going to have a colonoscopy and a biopsy. Maybe you should find yourself a doctor you can trust....Please don't give up....

Take care

dbmamaz Explorer

Ok, celiac hurts! Are you gluten-free? You didnt specify if you are or not. Did anything change 2 weeks ago when this started? Also, were you checked for parasites?

I didnt have such bad symptoms, others might have ideas for what helps w the D and cramping.

Keep working on those doctors, and if they act like its all in your head - find another doctor! Hope you feel better soon

Ursa Major Collaborator

What nonsense that you don't have pain with celiac disease! Before I figured out that my problem was gluten, I went to the ER with such intense pain that I thought I was dying! I had another one during that summer (2005) but didn't bother with the ER that time, because they were no help the first time.

I've never had that horrible pain again after I started the gluten-free diet.

You didn't say if you are on the gluten-free diet. Also, dairy or soy could be causing those symptoms as well.

YoloGx Rookie
Hi Everyone,

I am new to this site and I have been pretty sick and I don't know what to do. For the past 2 weeks I have had severe abdominal pain and diarrhea and I have been unable to eat ANYTHING because when I eat, the pain gets much worse. I have celiac disease and I have already lost 10 pounds with this. I also have bloating and I am very tired. I talked to my GI doc today and he said you don't have pain with celiac disease!! He said I needed to see a gyn doctor. So I called my gyn doc and he said to cal after my next period ended to see if I had a cyst. SO I called my GI doctor's office back and they said they will see me tomorrow. I feel like no one is listening to me!! This pain is real and I feel really sick!! DOes anyone know what I can do to help this situation? WHat can I tell my doctor to make him listen to me? Has anyone else had this type of problem? Please help!! Thank you!

I agree, you may be eating other things you are intolerant to.

I suggest you try going on a kind of fast, just eating some cooked vegetables you don't normally eat and maybe also rely on eating cooked slippery elm. Or, alternatively, just eat the slippery elm if nothing else agrees. It really is very soothing and healing.

The formula for slippery elm is as follows: 1 tablespoon slippery elm to one cup water. Put slippery elm in a very small amount of cold water and mix well so its no longer lumpy (it tends to resist water at first). Then add the rest of the water. Cook 10 to 15 minutes on a slow boil, stirring every while. If cinnamon is OK for you you could add that and maybe a little stevia to taste. It is very nutritive though a little mucous forming (the cinnamon helps counteract this).

The other thing that is soothing to the gut which is a lot quicker is marshmallow root. It is not mucous forming by the way. Take a teaspoon and mix it with again a very small amount of cold water. Then, once mixed, add water up to a cup, drink and then chase with some more water. This will help soothe your gut very quickly. Both herbs helps soothe and heal the villi--which really is where it is at.

You also could try digestive enzymes. It may make a huge difference in your ability to eat. Pancreatin might be to the point as may also be bromelain/papain. It is unlikey these will create any allergenic problems unless you are allergic to pineapple or papaya. I personally don't do well eating raw pineapple though cooked is OK. However these enzymes don't create a problem for me.

On that note, be careful of raw fruits or fruits in general. Some people are allergic to some or all of them. As far as vegetables, I am allergic to carrots and others often have tomato, potato and pepper allergies. I am allergic to nuts as are many celiacs. Sprouting seeds helps make them more digestible.

Anything is suspect so go about figuring out what you can or can't eat slowly, adding one item at a time every couple of days and keep book recording your reactions or not, as well as your pulse rate. A rapid pulse sometimes and a slwo pulse other times not associated with shock or activity usually indicates a sensitivity.

There are more things you can do, however this would be a good start. Nevertheless taking B vitamins might be really important since its possible you are deficient in some of them. I don't make or utilize vitamin B-1 very easily for instance which makes digesting proteins and carbohydrates difficult. Two years go I started taking co-enzyme B complex from Country Life and it has made a huge difference for the positive for me.

If you are getting all these blood panels done, have them check out your B's--thoroughly. It often is a real problem for people with celiac, and it thus compounds the problem.

You could also be deficient in other vitamins and minerals as well. Actually it is likely, so if you are having it done get it done!

Good luck!

itchygirl Newbie

Celiac disease also puts you at high risk for pancreatits, which causes severe pain whenever you eat. Has your doctor done any bloodwork, esp amylase and lipase?

If he needs a study to jog his tiny doctor brain, here is one:

Open Original Shared Link

and here are the symptoms of pancreatitis

Open Original Shared Link

flourgirl Apprentice

You're not alone! Before my diagnosis I went months getting sicker and sicker. I still have a lot of stomach pain and trouble. It hurts if I don't eat, hurts if I do, and it doesn't seem to matter what it is that I eat. My weight dropped from 130 to 105. Since going gluten free I've gained some back, holding steady at 114, I eat because I have to, not because I want to. I had such bloating and pain for so long, Ihad many tests for nothing...but at least eliminated some things. Of course there can be pain...and not just the stomache! Stick to your guns, take charge of your treatment with knowledge and courage. Some people take longer to heal than others, so be patient, too. Good luck and get better soon.


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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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