Celiac And Recurrent C.diff

[Anya]

We have a 20 month old baby who has just been diagnosed with the DQ2 gene. We have been struggling with recurrent c.diff for over 8 months and were searching for underlying conditions. Her Ttg Iga is normal, but she is extremely low in IgA. I know that IgA defficiency can create false negatives, can a borderline low IgA value do the same? I should also note that she has been on a rather low gluten diet.

Do we absolutely need to have a biopsy done to confirm that celiac is present?

[cassP]

We have a 20 month old baby who has just been diagnosed with the DQ2 gene. We have been struggling with recurrent c.diff for over 8 months and were searching for underlying conditions. Her Ttg Iga is normal, but she is extremely low in IgA. I know that IgA defficiency can create false negatives, can a borderline low IgA value do the same? I should also note that she has been on a rather low gluten diet.

Do we absolutely need to have a biopsy done to confirm that celiac is present?

yes, low iga can create inconclusive or false negative results... ESPECIALLY if she is ALSO on a LOW gluten diet.

Also- her being low on Iga can mean that she is also more susceptible to infections (could explain recurring c diff)

i hope someone has better advice for u as far as helping build her immunity and whether or not to subject her to an endoscopy. she's already 20 months so im sure you're done breastfeeding- that always helps with immunity. as an adult- (im Iga deficient), i try to eat healthy on top of taking probiotics... i also take Grapefruit Seed Extract with water... but i dont know how to translate those habits to a child under 2.

do they have probiotics for babies??

i also rely on Ionized Silver when i have infections (anything- Yeast, Bladder infection, sore throat, etc)... but i dont know what recommendation for baby. i DID have a friend who used Ionized Silver for her son's ear infections- but he was around 7 or 8 years old.

if it was my 20month old- i dont think i would subject them to the endoscopy. ???

im wondering too what exactly they do in Italy. because over there- they test your genes when you're an infant- for Celiac related genes.. probably even more than DQ2 & DQ8... then im curious what they do if the baby tests positive- do they subject them to endos?? or do they just have routine antibody tests?? or do they just put them on the diet??

ok, sorry for LONG "thinking out loud"... hope it made sense

ps- since your daughter is DQ2, you should be prepared for the possibility that she needs to be gluten free.. and that these c-diff infections could also "trigger" it... and if she's got the gene- you & her father should also get tested

[burdee]

We have a 20 month old baby who has just been diagnosed with the DQ2 gene. We have been struggling with recurrent c.diff for over 8 months and were searching for underlying conditions. Her Ttg Iga is normal, but she is extremely low in IgA. I know that IgA defficiency can create false negatives, can a borderline low IgA value do the same? I should also note that she has been on a rather low gluten diet.

Do we absolutely need to have a biopsy done to confirm that celiac is present?

Even without underlying conditions which challenge immunity, c-diff is a difficult bacteria to eliminate. How did your doctor treat the initial c-diff infection? How many recurrences has your daughter experienced? Did your doc change the treatment drug after the first recurrence?

I had 6 recurrences of c-diff, after I finally convinced my doc to give me a stool test for a gastrointestinal infection. I suspect I had c-diff for 2 months before I even was diagnosed. Then my doc gave me flagyl for 10 days. As soon as I stopped flagyl, the c-diff symptoms returned. My doc prescribed another round of flagyl. However, the c-diff symptoms increased as did the flagyl side effects during that second round. I was sooo sick I didn't even want to eat. Then my doc prescribed vancomycin, but only for 7 rather than the standard 10 days. The c-diff returned. So he next tried a 2 week treatment. Then another recurrence. Then I knew my doc didn't know how to treat recurrent c-diff. So I researched treatment and found studies for effective treatment for recurrent c-diff infections. If the patient has one recurrence, he/she is very likely to get another recurrence, because of the way the c-diff bacteria functions. When c-diff encounters antibiotic drugs, it produces spores, which are resistant to treatment. As soon as treatment ends, the spores morph into full blown bacteria and attack the intestines creating those toxins which cause symptoms. The trick to treating recurrent c-diff is eliminating the spores and the bacteria.

One study reported successfully treating 163 patients with recurrent c-diff. The most effective regimens used a prolonged tapering or pulse-dosing regimen of vancomycin. Another doctor described using a tapering and pulse-dosing regimen of vancomycin for treatment of a second c-diff recurrence. Vancomycin, 125 mg every 6 hours orally, is given for 14 days, followed by a tapering dose of vancomycin (125 mg every 12 hours for 7 days, then 125 mg daily for a further 7 days), followed in turn by pulse-dosed vancomycin (125 mg once every 2 days for 4 doses, then once every 3 days for 5 doses). Prolonged flagyl treatment can potentially cause peripheral neuropathy.

Other procedures have been reported for management of multiple recurrences of CDI, including probiotics, antibiotics, toxin binders, and immune-based treatments, but none proved effective. One probiotic, Saccharomyces boulardii, was effective in preventing recurrent CDI in patients with prior recurrences.

[ElseB]

Is the c. diff diagnosis based on symptoms alone, or on stool tests? I was diagnosed with celiac after having c. diff. I was sick with c.diff for 3 months and on flagyl. I was still really sick but tests showed the c.diff was gone. It was then that the doctor tested for celiac. The celiac symptoms were very similar to the c.diff symptoms. Also, I found that after c.diff it took a long time for my gut to heal. So while the infection was gone, and I was gluten free, the symptoms were all still there.

[Judyin Philly]

I'm 68 but Jersey Angel sent me this as she knows of my issues with c-diff.

I've been reading on a c-diff forum about the pulsing of the vanco.

I've had it 3 times after treatment with abx for stomach ulcers.

Finally my GI sent me to a Infectious Disease Specialist and he treats only the most difficult cases and has found a 90% cure rate of the c-diff after people have been on vanco with a probiotic called Bio-K+. It's made from bacteria from humans rather than pigs or cows. It can be found at health food stores but DH got mine from Amazon.

It has gotten rid of the c-diff with stools now neg. It worked on the side effects of the c-diff with constant D in 2 days.

I know it sounds easy and a miracle 'pill' but honestly it worked for me & his other patients. My GI and internist had never heard of it either.

The C-diff forum kept saying...........probiotics............so I'd at least ask your Pediatrician if your comfortable with it or google the product.

Don't know if this will help but it kills me to think a baby could go through this it was hard enough for a old lady

There is a liquid but I took the hospital dose of 50 billion once a day. It must be kept in the frig. I hope this helps and maybe googling will give you more info

Good luck and keep us informed

Judy

[Anya]

Thank you everyone for the responses. Our daughter has relapsed 6 times and 4 of the relapses were confirmed with positive tests. She relapsed twice while on vancomycin, those 2 relapses were not confirmed with positive tests, but treated based on symptoms. We did 2 rounds of flagyl, a very long taper and pulsing approach with vancomycin over 4 months and for the last round we tried a new drug Alinia. 4 days after the Alinia was stopped, some of the symptoms returned and we thought that she was relapsing, but right now she is kind of hanging in there. We are not sure if she is going to relapse again or if she is able to fight it this time. The distinctive c.diff odor is definitely present. We don't want to treat with any more antibiotics unless it is absolutely necessary. We did high dose probiotics over 6 months now, incl. Sachoromyces Boulardi, Culturelle and VSL#3. Before the c.diff infection she was chronically constipated. Doctors are convinced that she has IBD, but I pushed for celiac evaluation and did not trust the anti-body test due to the borderline low igA and low gluten diet I had her on. She has also below threshold igG values.

I have myself a condition that could only be explained with celiac and I am on a very low gluten and non-dairy diet myself. My understanding is that if you are truly celiac you have to avoid gluten 100%? I have chronic sinus infections (about once a month) that I need to manage with nasal irrigation. So, I am wondering if that could be celiac related as well? I did not take the genetic test for insurance reasons, I believe an insurance can deny you if you are positive? Is that really true?

So, can celiac cause an overgrowth of c.diff or does c.diff cause celiac? Does anyone know that?

We will need to make a decision whether we put her through a colonoscopy and endoscopy to rule out IBD and perhaps confirm or not confirm celiac or whether we try a completely gluten-free diet and see if the c.diff clears up completely. If we do the colonoscopy, I would probably have to put her on a heavy gluten diet beforehand to make sure that it shows up. Any input would be appreciated.

[burdee]

Thank you everyone for the responses. Our daughter has relapsed 6 times and 4 of the relapses were confirmed with positive tests. She relapsed twice while on vancomycin, those 2 relapses were not confirmed with positive tests, but treated based on symptoms. We did 2 rounds of flagyl, a very long taper and pulsing approach with vancomycin over 4 months and for the last round we tried a new drug Alinia. 4 days after the Alinia was stopped, some of the symptoms returned and we thought that she was relapsing, but right now she is kind of hanging in there. We are not sure if she is going to relapse again or if she is able to fight it this time. The distinctive c.diff odor is definitely present. We don't want to treat with any more antibiotics unless it is absolutely necessary. We did high dose probiotics over 6 months now, incl. Sachoromyces Boulardi, Culturelle and VSL#3. Before the c.diff infection she was chronically constipated. Doctors are convinced that she has IBD, but I pushed for celiac evaluation and did not trust the anti-body test due to the borderline low igA and low gluten diet I had her on. She has also below threshold igG values.

I have myself a condition that could only be explained with celiac and I am on a very low gluten and non-dairy diet myself. My understanding is that if you are truly celiac you have to avoid gluten 100%? I have chronic sinus infections (about once a month) that I need to manage with nasal irrigation. So, I am wondering if that could be celiac related as well? I did not take the genetic test for insurance reasons, I believe an insurance can deny you if you are positive? Is that really true?

So, can celiac cause an overgrowth of c.diff or does c.diff cause celiac? Does anyone know that?

We will need to make a decision whether we put her through a colonoscopy and endoscopy to rule out IBD and perhaps confirm or not confirm celiac or whether we try a completely gluten-free diet and see if the c.diff clears up completely. If we do the colonoscopy, I would probably have to put her on a heavy gluten diet beforehand to make sure that it shows up. Any input would be appreciated.

I don't think c-d9ff 'causes' celiac, because c-diff is a bacteria and celiac disease is an autoimmune disease. HOWEVER, celiac can cause malabsorption of vitamin B12, which is necessary to fight infections. So celiac can make you more vulnerable to gastro infections, like C-diff. However, just being hospitalized is enough to expose someone to c-diff. Having celiac disease may also affect vitamin D absorption and thyroid function, which are both necessary to prevent and fight off infections.