Bad Constipation; Wheat Bran Only Thing That Helps?

[frustratedpenguin]

My husband was recently diagnosed with Celiac Disease. He isn't your typical case. I mean, he had the bad diarrhea his whole life, but he struggled with being overweight. His is a story for another day. Let's just say his blood test was *always* negative, no matter how many times throughout the years he had it done (Anti-TTg-IgA). He always ate lots of gluten to make sure that the test would be "accurate." It wasn't until he had a biopsy that he was proved positive.

 

I suspect his sister has Celiac Disease as well. She has anemia, enamel loss (most of her teeth are pulled) and a whole slew of other symptoms. But she has (and always has had) severe constipation. She gets bad prolapsed colon and is scheduled to get surgery in a couple of years (Canada is awesome if you like wait lists).

 

She too, has negative blood tests, but unfortunately, the wait for her to see a gastroenterologist in order to get a biopsy is about 2-3 years. She is getting really, really sick, so I suggested that she go on a gluten free diet. She was really concerned about giving up her wheat bran. She claims that it is the only thing that helps her to go. I am skeptical on fibre actually helping constipation (especially if it is SIBO based), but I insisted that if she feels that fibre helps her, that she could try corn fibre. Well... it wasn't working.

 

She ended up getting the prolapsed colon again and is in a lot of pain. The only thing I can think of, is that the wheat bran irritates the heck out of her colon and causes everything to expel. It can't possibly be the fibre in it helping, because corn fibre has almost double the amount of fibre as wheat.

 

Has anyone had experience with this? Wheat bran helping them to go, but when you stopped eating it, the constipation got really bad? What did you do to get through it? I am suggesting to her Restoralax (Miralax) until things heal up, and then further suggesting she get a protocol to deal with possible SIBO (small intestine bacterial overgrowth), since my husband, too had SIBO and needed Rifaxamin to stop his vomiting when the gluten free diet didn't (she would need Rifaxamin + Neomycin). But she is absolutely petrified of "laxatives" since she has been addicted to them in the past. I told her Restoralax is not like Ex-lax *at all* and it is only temporary. And she is terrified of antibiotics even though I tell her that Rifaximin is non-systemic and is not like the other ones that wreak havoc on your system.

 

How did any of you get better from constipation?

[bartfull]

One of the things that bothered me when I went gluten-free was that instead of "going" easily, which I did three times each morning, was that things became too solid. I often found myself constipated which seemed worse to me than the other way. I started eating nuts, rather large servings of them, every morning after my breakfast, and again in mid-afternoon. Almost four years later I still do, and if I miss I have a hard time going the next day.

 

Of course your sister-in-law seems to have more going on and nuts might not be good for her. Maybe have her check with her doctor. Maybe a phone call?

[Christine0125]

Miralax has helped my daughter .  Probiotics seem to help me with regularity.  So sorry to hear she's suffering so bad and unable to get the necessary tests.  What about good old fashioned prune juice?

[frustratedpenguin]

She downs the prune juice like water, but even then she'll still suffer with constipation. Something is very, very wrong.

 

Her doctor is absolutely useless. He did the blood test, it came back as negative, he said, "You don't have Celiac Disease." She explained how her brother (my husband) was also negative, but his biopsy was positive, and that she would like a referral to a gastroenterologist. He refused. I went with her, and he changed his tune... or so I thought. I don't know what he wrote on the referral, but whatever he did, it got rejected. So I called the GI office and had them call my sister-in-law with information on what needs to be on the referral in order for it to be accepted. They also told her, that even if her symptoms are very bad, they only will triage her high if she is one of those people that are "wasting away" (classic Celiac... losing weight to the point of near death).

 

They said any other suspected Celiac Disease patients are triaged very low, and it will be a 2-3 year wait. She has been referred to a colorectal surgeon, but the surgeon doesn't do the biopsies for Celiac and said she needs a referral from her family doc to a gastroenterologist.

 

Every other doctor she speaks to, just point to the blood test. "You're negative. You don't have Celiac Disease." I like to shove this is doctor's faces: Open Original Shared Link

 

I'm so sick of the medical system here!!! Thankfully, we found a really great family doctor, who... get this... also has Celiac Disease! She said it took 10 years for her to get diagnosed!!! So she totally understands what a huge pain in the butt it is (pun intended)!!! I am trying to convince my sister-in-law to switch to her, but it is difficult for her to get out to where my doctor is.

 

So if I could find someone who has similar issues as her, and maybe give her some long term hope, then she might not be tempted to go back on the wheat bran. I'm really thinking it's SIBO, which I know can cause severe constipation. In my husband's case, that's what was causing his "random" vomiting, and Rifaxmin totally fixed him right up. But the Celiac Disease was at the root of it all, so gluten needed to be eliminated.

[frustratedpenguin]

Oh, by the way. At that GI office, there are 9 gastroenterologists. On the wait list (just the wait list; not how many active patients), there are 4,000-6,000 people!!! That is how backed up our system is. Too many doctors want to treat symptoms and not root causes, so there are *a lot* of sick people out there. And the government single-tier health care system is a complete monster. It can never be "funded" enough.

 

There are three countries in the world with single-tier, government run health care. North Korea, Cuba, and... Canada. :/

[kareng]

I would think that, if a person has Celiac, when they have healed their intestines - they might not need wheat bran anymore.

[frustratedpenguin]

I forgot to specify. She has only been gluten free for about a week.

[chuckd]

I've been gluten free for more then 3 years (celiac)! My GI suggested fiber & lots of water. The only truly gluten free fiber supplement I've found is Konsyl (psyllium fiber) - it's not easy to take but 1 teaspoon in a glass of water before bed keeps me regular & lots of water all day long :-)

[nvsmom]

I had C my entire life too.  I was taking so many types of fibre to try and get things going that it was ridiculous.  And if I travelled or was at all stressed, I would only go about once a week.  Bleh.

 

My C did not change until I had been gluten-free for 9 months, but to be honest, I don't think it was the gluten-free diet that helped but finally being treated correctly (for me) for my hypothyroidism with a med with some T3 in it.  Hypothyroidism can slow metabolism by quite a bit; once it is treated, then things get, ahem, moving.

 

Perhaps a thyroid check is in order?

[LauraTX]

With only being gluten-free for a week, it is going to take more time for things to change for the better.  In the meanwhile, maybe she can try whole prunes instead of just the juice.  I have bad constipation because of medications I am on, and I usually eat 5 prunes a day for regularity.  A psyllium fiber supplement can help, too.  Staying hydrated is important as well as avoiding foods that can contribute to constipation, like junk foods, cheese, etc.  Basically, any food that doesn't contribute to GI health needs to be minimized until the problems are under control.  Fruits(dried fruit packs a good punch), veggies, nuts, whole grains,  not too much fatty meals like meats or dairy.  Air popped or a fat free popcorn is really good for the go.  Steer her towards whole, naturally gluten-free foods and away from the packaged stuff for now.  A lot of the packaged gluten-free foods are still junk food.

 

I can understand her being terrified of laxatives, as they are not good for long term use in the most part.  Docusate sodium is a more gentle one that acts differently, doesn't have the cramping stuff like exlax.  Miralax/Restorolax is in its own category and doesn't work like the other pill laxatives... you can tell her it is like a slippery cocktail that helps things move along through.  It doesn't mess with things chemically and cause dependency like some of the stimulant laxatives.   If she is very constipated it will definitely be uncomfortable while her system gets itself cleared out, and then a daily maintenance dose can be figured out, and then you can decrease it and eventually discontinue use if it is tolerated.  Enemas can help clear out acute constipation, definitely not a long term solution, but for this and any problematic backups, it can help clear things out.  They may be weird, but they are easier to tolerate than those stimulant laxatives and all that cramping and pain.

 

It is also interesting that their bloodwork both was negative.  It may be worth checking to see if a total IgA and IgG level was drawn on either sibling, because if those are low, they can cause false negatives in the blood testing.  I am so sorry your family has to deal with things like a waitlist, and I understand and support the sister just going gluten-free now.  I think that is a good decision.  If she starts to think it isn't helping and wants to eat gluten again, try to get her to stay on it for as long as possible, because when someone is undiagnosed for a long time, it can take a long time for their intestines to heal up.

[frustratedpenguin]

LauraTX, I know for sure that my husband had his IgA and IgG levels checked and he was not deficient. That's why I posted the link to the study in Iran. Accuracy is based on the degree of villous atrophy. Even people with Marsh IIIC (the worst villous atrophy), the diagnostic accuracy level of the blood test was only about 80%. It is significantly lower in accuracy in people with the lesser degrees of villous atrophy.

 

My husband had to go gluten free before seeing the gastroenterologist (he had to wait a year and a half; the wait lists just keep getting worse), and (it's a long story) he was really afraid to eat wheat again. She did a gastroscopy anyway, and it showed normal villous structures and zero inflammation (he was eating gluten free).

 

Then, after his mom put some flour on the turkey without thinking (and didn't tell my husband), and he didn't get super sick right away, he decided to start eating gluten again. He started getting Celiac symptoms all over again and gained 60 lbs (though he was in TOTAL denial), but it wasn't as intense symptoms as before. So he was able to stick it out for a few months of eating gluten. He got the gastroscopy again, and it showed about Marsh I or Marsh II villous atrophy. This is non-specific (it can be a whole host of things), but because he also got a colonoscopy and Chrohn's and Colitis were ruled out, his GI doc was certain it is Celiac Disease because he had no inflammation while eating gluten free, and inflammation while eating gluten.

[LauraTX]

Very interesting that he is quite likely a seronegative celiac.  Hopefully the sister will see some improvement on a gluten-free diet, too, as it is likely she has the same thing.  

[MomBTired]

Extreme mama here. My son was so sick, his gastro system was a mess, had more scopes than an 80 year old and didn't have a positive Celiac test for uhhh 8 or 9 years on that battle. His constipation was so bad that his large intestine was removed. A colonic manometry showed that his nerves were dead. Took many years to get the why to that question answered so don't give up. In America, you don't have a problem getting in but if they do not have a clear answer, they call you psychological and also just treat the symptoms.

[frustratedpenguin]

MomBTired, when your son had the scopes, what were the results of the biopsy? Was there any inflammation at all in the duodenum? Sometimes when there is inflammation and it's non-specific, doctors simply say, "It's not Celiac Disease." They literally wait until it progresses to the point where the villi (the little hairy things in the duodenum) are completely flattened, and then they call it Celiac Disease.

 

The good doctors know that inflammation (and not fully flattened villi) means that it *could* be Celiac Disease, and have patients go on a gluten free diet, and then after some time perform another biopsy. If there is no inflammation (ie, improvement), then Celiac Disease can be confirmed.

[frustratedpenguin]

Well... it's over now. My sister-in-law caved and went back to eating her wheat bran. She absolutely *refused* to take the Restoralax. She would rather eat wheat (even though she went through extreme withdrawals after going gluten free) than take Restoralax which is completely safe... especially for just a couple of months. It didn't matter how much I explained the difference between stimulant laxatives (Ex-lax, Correctol, etc) and osmotic laxatives, she wouldn't do it. She was about to, but the whole time I warned her that it takes 1-4 days to start working (I wanted her on it sooner), but I think she just freaked out and ate the wheat bran instead since it works "faster." Probably irritates the heck out of her colon.

 

I'm so frustrated. I know the wheat messes with her head too, and it drives everybody crazy. She knows something is messing with her head, too.

[MomBTired]

His scopes were always normal, biopsies also until this last one where he was so inflamed he was cut by the scope and the biopsy was positive also

[MomBTired]

Penguin, many things can cause constipation. Celiac did not cause my son's, it was a nerve disease that did. My son had absolutely no symptoms of celiac at all until the dermatitis herpetaformis showed it's ugly blisters up. Do not get frustrated that she wants to eat the bran flakes, if it helps her right now while she waits for help, so be it. It's better she has gluten in her system for the tests anyways.