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I'm So Confused...please Help


mamarie

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mamarie Rookie

Okay, my gastro doctor doesn't seem to believe in gluten intolerance. Just Celiac. If tests show Celiac, then gluten-free is the way to go. Otherwise, no gluten intolerance. I tested negative to everything except for the gene test. Considering my digestion issues plus the positive gene test, I went gluten free, thinking that perhaps I really am gluten intolerant. My doctor thinks I'm being extreme and ridiculous.

So, two tests showed that I have chronic acid reflux and also bacerial overgrowth in my stomach. The doctor put me on Nexium (which I decided *not* to take) and also an anitibiotic (Xifaxan). I went gluten free two weeks before I started the antibiotics, and was feeling great (no stomach pain after eating or floaty diarreah). I'm about 5 days into the antibiotic, and my stomach pain is back. Really bad. It's making me wonder if the doctor is right, and I'm not gluten intolerant after all. But I'm also wondering if the antibiotic is upsetting my stomach? But it is supposed to be getting rid to the bacteria, so I would think I should only be feeling better. ?????

I'm also taking a probiotic and vitamin D supplements (as I'm vitamin D deficient).

I just don't know what to do. The way I'm feeling lately... it seems that gluten free isn't taking care of my stomach issues. I know for a fact the days my stomach has been hurting, I didn't ingest gluten... I have been at home and been very very careful. Other tests also concluded I wasn't allergic to lactose or fructose, so I don't think that's the issue either.

I'm tempted to forget the whole thing. Maybe my doctor is right.

Edited to say, I've also been exhausted since starting the antibiotics. Like, wanting to sleep a couple hours in the middle of the day. Not like me!!


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sb2178 Enthusiast

From what I've seen elsewhere, the "die off" from the bacteria can be an awful process. Don't know much about it, but changing your gut flora can definitely affect your overall well being, not just your digestion. What are the side effects of the medication? Some of the antibiotics can be as rough as the disease.

I think the two week diet trial is an indication that you need to stick with the diet for a while longer. At least until you finish the antibiotics and another week or two to recover. Are you taking a probiotic to help recolonize your intestines with good bugs? That may help, as could diet changes, depending on what you eat. There are other well informed people here who can add a lot more. This is just to get you started with a few thoughts!

Wenmin Enthusiast

Antibiotics kill the good and the bad bacteria. When the bacteria begins to grow back, the bad may overtake the good. This is called C-Diff (google this). It is tested simply with a stool sample. Really hard to get rid of. My mother is a transplant patient and has been fighting C-diff since March. She finally got to see a infectious disease doctor and I think we might be on the road to recovery. Her symptoms were really bad stomach cramps, loss of weight (she weighs 115 lbs normal weight), nausea, lethargic, slept for about 19 hours daily, etc.

Wenmin

ravenwoodglass Mentor

One more note to add to what the others said, you did make sure the med is gluten free right? Either the pharmacist or preferably the maker can tell you.

Marz Enthusiast

Antibiotics, especially the strong ones for the GIT always make me feel worse. I get a really sore stomach, like a really "sour" feeling, and d. Just get through them, you need to make sure you finish the course now that you've started. And continue taking probiotics after meds are done to make sure bad bugs don't move back in afterwards. Make sure probiotics are gluten free. I found when I was really sick to my stomach, paw paw ( I think also called papaya) is very soothing to the stomach.

Hope you feel better soon! I felt much better once I finished my antibiotics, but couldn't tell if it was just relief to stop taking them!

Skylark Collaborator

It's almost certainly the antibiotic. Look at the side effects list on Xifaxan. It includes nausea, vomiting, gas, stomach pain, and constipation!

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As far as gluten intolerance, your doctor is the one being "extreme and ridiculous". Celiac disease is a process that starts with gluten sensitivity. Doctors who are very knowledgeable about celiac say they see patients who are definitely not celiac but who feel much better off gluten. The general advice from a good doctor is "if it makes you sick, don't eat it." Just pat your doctor on the head and give the gluten-free diet a good try.

T.H. Community Regular

>>>>I'm also taking a probiotic and vitamin D supplements (as I'm vitamin D deficient).

Did you make sure the probiotic and the vitamin were gluten-free, too? I've seen a number of them that aren't.

And as for your doc - honestly? I really doubt the doc is right. My GI? He gave me tests for celiac and allergies, and then added, "And then I want you to tell us about anything that seems to be bothering you, because the tests don't tell us everything."

That's become my gold standard for doctors. If I have one who remembers that medicine is still evolving and doctors are still learning, and is willing to listen when I tell him there is pain instead of dismissing me if the test doesn't agree with my experience, then I go. If I have one who gets up on high and acts as though medical science knows everything already...that's not a good sign. Especially with Celiac Disease and gluten, since they are finding out new things about it all the time.


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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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