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I'm So Confused...please Help

mamarie

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mamarie Rookie
mamarie
Posted

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
sb2178
Posted

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
Wenmin
Posted

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
ravenwoodglass
Posted

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
Marz
Posted

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
Skylark
Posted

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
T.H.
Posted

>>>>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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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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