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Patient perspectives on gluten grain intolerances and sensitivities

including the celiac disease subset,

and the risks of gluten challenges for diagnostic purposes.

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Initial Adverse Reactions to GF Diet

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Hi group,
 
I have a diabetic friend, a young mom, who started the gluten free diet in the past 6 months.  Her body lets her know when she gets gluten, so she doesn't even do communion bread.  She is very careful with carbs due to her diabetes and doesn't do GF substitutes other than a few rice crackers and no sugar.  Mainly she eats salad, eggs, chicken, veggies, etc.   
 
Recently her dr put her on Omega 3 fish oils to help with her carpal tunnel and he cut her thyroid meds but she felt so bad he put it back up after 6 weeks. 
 
She is normally a slim person but has gained 10 lbs in a little over a month.  It's mainly in the tummy like a distended abdomen with accompanying soreness that a trip to the bathroom relieves.   
 
The weight gain could be better absorption of food, but any ideas on why a distended abdomen now?  Has anyone else had this experience?  Could this be some detox reaction? Any other comments for her situation?
 
Thanks all in advance.  You guys are great.  I will summarize.

Olive Kaiser
 

Submitted by an RN

A couple ideas come to mind, for what they're worth.
1) the weight gain could possibly be from those 6 weeks of inadequate thyroid hormone
2) pregnant?
3) reacting to a new substance like the Omega 3 stuff?
4) more ominous things also come to mind like ovarian cancer, hepatitis,
lymphoma, pancreatitis, all of which are a reason to go back to her Primary
Care Physician pronto.

~~~

I was dx 5 years ago.
I had the same reaction from dairy and eggs - after going gf it was obvious there was still something wrong.

I tested positive for an intolerance to both through www.enterolab.com

I have been accidentally dosed with egg since and the reaction I get is not pretty.

~~~

I have been GF for 1 year and my fecal test (Enterolab) showed antibodies for eggs, dairy, soy and malabsorption of fat.  The reason I say this is because whenever I eat those items (eggs, dairy, soy and fat) I bloat.

~~~

I certainly gained weight after going GF because I was so malnourished, but
no distended abdomen.

~~~

You mentioned thyroid meds. I recently learned that synthroid is no longer guaranteed to be gf. I have talked to the company as well, there isn't gluten directly in the ingredients, but cross contamination could be an issue. My sister and nephew both believe they were reacting to it. We have switched to the generic version called Levoxothine(sp??) By the manufacturer amylan. Seems to be better, and when I spoke to them at Mylan they were very convincing that they are gf. Its unsettling how "unregulated" the meds are. They are not required to abide by the FDA food regulations. Maybe she could try this med change. Also double check the rice cakes-some have oats in them. Also, my family all reacts to distilled vinegar. Its supposed to be ok, but we get terrible reactions to it. If she wasn't feeling poorly, I would say that the weight is a good thing. We do typically gain weight once we begin healing because we are now absorbing, but your description sounds like gluten. I would also check shampoo, soap, lotion, lip products just to clear all possibilities. And medications. Even some aspirins, vitamins will have gluten. Double check them at www.glutenfreedrugs.com.

~~~

My daughter  has the same problem, we went to her GI and he said nothing! We trying to find another GI dr. but she to is very skinny and when she eats she looks like she is pregnant!!

~~~

I have the same thing, the distended stomach.
But, I wanted to tell you, and you can pass on to your friend.  I bring a piece of my own bread for communion.  Now I think that the Catholic religion will not do that, but I'm [not?] positive.  She can check that out.  I explained it to my Pastor, I'm Lutheran, and he goes along the line and when he gets to me, he just blesses my bread in my palm. 

~~~

Maybe your friend is gaining weight because of better absorption.  Also you might ask if she has an increase in eating salad, veggies and eggs. Some people bloat from these.

Also, might she have GI issues (bacterial overgrowth?) that wasn't apparent because of the other syptoms from Celiac Disease?  Those are my thoughts.  Oh, also, I wonder if chicken can cause bloating because of the grease.  Depends how it is prepared?  From this you might get some ideas of other things going on.

~~~

She may also be sensitive to dairy products.  (also possibly yeast overgrowth-no sugar or fermented foods)

~~~

Tell her to try using Lactaid milk for a few months.  The enzyme to digest milk sugars is created on the tip of the villi, which isn't there until the villi have fully healed.  Dropping regular milk from his diet made a huge difference in our son's bloated tummy.
 

Also, your friend may find that some of her weight gain is water weight - our son retained water for a while and seemed to gain a lot of weight quickly after going GF, but his system equalized itself after a while, and he lost that extra fluid. 

~~~

Not everyone tolerates fish oil well. 

I found a book called The Rosedale Diet, by Ron Rosedale who is a diabetic specialist in the Denver area.  His emphais is lots of omega-3s from natural souces--fish, flaxmeal, nuts, olive and canola oils rather than supplements, and also eliminated high density carbs which also makes it nearly g.f.   

I did a modified version---increased sources of omega 3s and cut my carb consumption in half & lost lots of inflammation (& lots of inches).  Even my fingers, which had been noticable short & fat for as long as I"ve been paying attentions (20+ years) got skinny.

The bloating and accompanying gas could be a result of lactose intolerance if she has increased the amount of milk she drink to make up for the foods she has had to eliminate.  While milk is the most common offender, it could be another food that's become more common in her diet...soy, tapioca and even rice would be the culprit.

I feel the Eat Right for Your Type by Peter D'Adamo is helpful in identifying problematic foods, especially in the bean family--many types but they aren't all created equal. 

A food diary could be helpful in tracking down the culprits...Use a steno notebook w/ the spiral at the top.  Foods go down one side w/ a line after breakfast/lunch/dinner to denote time.  Symptoms are written in the appropriate time frame.  Because the spiral is at the top, it's easy to slide the pages up to compares days based on symptoms.

A note on bloating...While doing research I ran across an article that said the rounded bellies in starving people (w/ toothpick arms and legs) isn't caused by bloating.  Instead, the body has consumed so much of its muscles mass for survival that the pressure inside the gut is stronger than the remaining muscles in the abdomen and intestines can contain. The belly isn't being pushed out, its hanging out  for lack of support....It probably doesn't help that there is likely a lot of bacterial gas-producing fermentation going on as well.

A lot of the sugar-free food for diabetics are know to cause diarrhea which is it isn't a red flag to check for celiac is diabetics.  Weight training builds muscles.  If your friend had a fast digestive track prior to dx, food probably didn't stay in her system very long prior to dx.  Without resistance, muscle tone in GI tract is probably poor. 

I remember how oddy heavy it felt to have food starting in my GI tract once I started the diet. If she has been malnourished for years, the weight gain is the body rebuilding itself...Building lost muscles and hopefully remineralizing bones.  In family pictures, I now look like I belong with them instead of a refuge camp....

~~~

I believe secondary allergies would be a likely reason, or she is still getting gluten via one of her medications. They bind a lot of medications with gluten, her doctor needs to check as does her pharmacist.

~~~

Could be dysbiosis. Basically, imbalance in the types of bacteria, which is rather common esp. in celiacs. There are three things that appear to help (from my own experience and listening to others):
 

1. GOOD probiotics. Not pure acidophilus, which has it's own problems sometimes, but bifudus and sacch. boulardiiseem to be good. Best is a mix of several bacteria, or kefir.
 

2. Bentonite clay: a tiny bit, with meals. Clay "skews" the bacterial mix to "normal" ... it's used in ponds for this reason too. My guess is that our predecessors got clay in most of their food and water (water used to come from the ground or streams mostly) and our guts expect it.
 

3. Glucomannan. Again, a tiny bit, with meals. I take it mixed with psyllium and bentonite. This slows down motility so food is digested better. Ginger and vinegar with meals help with this too. Glucomannan helps with diabetes too, because it slows down starch absorption.
 

4. Pepto bismol or other bismuth source. Bismuth prevents stomach damage and promotes healing, and, like bentonite, skews the bacterial mix. Dunno exactly how it works, but it's pretty harmless and easily available.

~~~

It is not unusual to have other food intolerances show up after dropping gluten. Some of the most common problem foods are eggs, casein, yeast, soy and corn. She may want to keep a food diary to try to figure this out. If she is eating any of the baked goods, some people have problems with xantham or guar gum. Is she eating any of the sugar alcohols? These can cause bloating.

~~~

I don't know if this is the case with your friend, but here are a couple of thngs to consider...

1. Too many carbs. I am also on a no-sugar, low-carb diet to control my hypoglycemia. I've found that it's really easy to overdo it on the carbs when switching over to gluten-free. You mentioned that she eats some rice crackers, maybe she's getting a lot more carbs that she thinks. I fell into this trap myself and am now trying to lose 20-30 lbs. (Also getting older doesn't help. I started gaining weight quickly after turning 30.)

2. Lots of extra fiber. This wouldn't answer the weight gain, but eating lots of fruits and vegetables can give you gas and stomach pains. On the diabetic diet, I'm sure that she she was already eating a lot of fruits and vegetables, but I found that when I went gluten-free, I somehow greatly increased my consumption of these foods. This came with additional gastric problems. (Again, getting older doesn't help.) It took me awhile to figure out the cause, but when I did realize what was going on, I decided to try Bean-zyme (the gluten-free version of Beano). It made a world of difference. All of the veggies that I had cut out because I just couldn't handle them are back with no problems.

~~~

The gluten free diet tends to be high in starch because of the rice/tapioca and other substitute flours.  Abdominal pain that is relieved by bowel movement could be ulcerative colitis.  This is one of the signs our daughter had.  Her need to go was also more urgent than formerly.  Has she been checked for blood in the stool?  She could also have an overgrowth problem.  For that we have used iFLORA from sedonalabs.com or MegaFlora (dairy free) which is
almost as effective.  She could also try a nonpasteurized sauerkraut like Wills Valley which has the cultures in it to suppress bad bugs in the gut.  The low carb diet should help that but some people are more prone than others like my daughter.  Has she had a course of antibiotics that could have wiped out good bacteria?  If she starts probiotics there will be an initial increase in gas because of dieoff of bad bacteria but then old and gas should go away.  If that does not help she should be checked for blood in the stool or if there is blood and it continues she will have to be colonoscopied.  Our family doc and the gastro both told us if there is diarrhea NEVER eat dairy as it can bring bleeding.  I am not sure the mechanism but I have heard this several times, and it was true with our daughter.  She was spotting blood and started eating alot of yogurt for the good germs and the bleeding got worse.  So tell your friend to be careful especially because diabetics are slower to heal and more prone to inflammatory problems.

~~~

One other thing that is also a cause of a distended abdomen is bacterial overgrowth of the small intestine. A gastroenterologist can test for this.

~~~

Late addition:

Nowhere in the list did I read the possibility of a fructose intolerance.  My gastro tested me for this last year, and I was positive to it.  I have not found a lot of information about it, but it seems to be a problem if I eat fruit in the morning, especially on an empty stomach.   The main symptom is bloating, and if I don't eat any fruit, I am not bloated.  I am celiac, and sensitive to several other things, so it is always hard to know which things are the problem.  But your person might want to be tested for fructose intolerance if all else fails.

 

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