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healthynewman

2 Yrs gluten-free And Still Have Stomach/ Bowel Discomfort

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Hi All,

I really need some help and feedback--I've run out of ideas. Here's my history. Thanks for plowing through this, as I appreciate having as many people's feedback as possible on my situation.

I was diagnosed with Celiac 2 years ago (blood and biopsy), and my heartburn symptoms went away within one week. Yahoo! I did not have any major symptoms for 5 months. Then I had stomach heartburn and abdominal discomfort off and on for a month or two, and had a scope of stomach and upper small bowel and colonoscopy that showed no problems. I also saw a naturopath that prescribed chinese medicine.

The abdominal problems went away (more or less) for 3 months and then returned off and on for the next 6 months, during which time I had an MRI of my abdomen showing no problems and a test for H. Pylori (negative). I've been on all of the heartburn meds (prilosec, prevesid, nexium, raniditine), and things get better and then get worse. I've considered that some of this may be related to stress, but there doesn't seem to be any related pattern, and my life is not super high stress, except when if have to deal with my gut. I asked my gastro if I might have other food sensitivities besides gluten and the he didn't believe that was the problem. He had no more advise for me.

Since then, I've had periods of few or no symptoms (like when I was in Peru for a month), and periods when my symptoms (heartburn and bowel discomfort) are present off and on all day for weeks.

When I was in Peru I ate quinoa, potatoes, beef, cheese, gluten-free rice-bread, corn, and drank wine, milk, coffee, tea and purified water. Pretty basic diet. When I got back from Peru this March, my symptoms returned within a month (stomach heartburn, bowel discomfort, no diahrrea--I've not had much of that ever). I've been trying an elimination diet for the last 2 months, eating only rice, quinoa, vegetables, and organic chicken. I've tried more chinese medicine, acupuncture, and even eliminated tap water (with chlorine) from my diet. I get better for a few days, and then get worse. A bit of a roller coaster--and I'm getting frustrated and worried.

I am looking for a really good MD/ ND or resourse in the Pacific NW (preferable Portland) that can give me some direction. I would also be open to personal info and strategies from others with similar symptoms or history. At this point, I appreciate all input.

Thanks,

Kurt

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While in the U.S., do you eat things w/ soy?

Are you keeping a food/symptom diary?


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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The fact that you were well in Peru does suggest that it is something in your home diet that is causing the problem.

I'll warrant that you weren't drinking pasteurised, homogenised milk over there. Have you tried dropping all dairy to see if it makes any difference?

Can you outline what you eat at home?

Although a bit time-consuming, it's good practice when you are going through problems like this, to keep a food diary to see if any patterns show up. Unfortunately responses are not always immediate and can take hours or even days for reactions to show up which makes it harder, but if you keep a diary you may then be able to pick up on things - for instance you might notice that when you were bad a couple times, 3 days before both bouts you had Stilton cheese, or some other repeated food.

Things like milk and dairy are ingested daily so it could be down to a build-up. Might be worth going dairy-free for a few weeks to see if it makes any difference, then later re-introduce the dairy foods one a few days apart at a time. Many who are gluten-intolerant also seem to have problems with lactose and often casein too. I read somewhere that apparently the protein molecule in casein is very similar to gluten.


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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As a mom of three who is likely to have some combination of add/bipolarII/mild aspergers on top of brain fog . . . i cant deal with elimination diets and food diaries to figure out what foods are bothering me. I went straight for testing. I got a test from A.L.C.A.T (dont spell it w/out the dots cuz it will get changed). You can get a test for up to 200 foods, you can also do tests for colors/preservatives, chemicals, molds. That test i ordered myself from their website - you pay for it ahead of time, they send it to you and you go to your closest lab corp to get the blood drawn, and they send it back.

I also did an allergy test (for foods, from an allergist) - and some of the things were different on the two tests.

Anyways, i have so many reactions its hard to keep really clean - i suspect right now i'm having a reaction to a coconut frozen desert made on shared equipment . . . but i managed to trace one reaction to the additive in the lemon juice, not the lemon juice itself, so now i can use fresh lemons, just not the bottled juice.

I still think gluten is my biggest trigger, but doing all the testing and getting on a super clean diet finally made me feel much, much better.

It definitely sounds like there is another food you need to eliminate!


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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It might seem like a long shot but believe it or not mold exposure can cause problems like this.

I always suspect mold when someone says they felt better in another place and then symptoms returned when they came home. It sounds like you've restricted your diet and still are having the same symptoms.

Is it at all possible that you are exposed to mold in your home or work environment?


Rachel

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Anyways, i have so many reactions its hard to keep really clean - i suspect right now i'm having a reaction to a coconut frozen desert made on shared equipment . . . but i managed to trace one reaction to the additive in the lemon juice, not the lemon juice itself, so now i can use fresh lemons, just not the bottled juice.

So was it sulfites that you reacted to?

I just thought I'd mention that many times when a person is reactive to one food chemical...they are also reactive to others.

I'm reactive to all of the food chemicals...sulfites only being one of them. With food chemicals the reaction is usually based on a person's threshold.....so you dont necessarily respond until you reach that threshold. For some people the tolerance level may be very low.

The food chemicals can accumulate from different sources so when a reaction occurs its not necessarily one food that caused it....it can be a variety of foods all contributing to the total load.

Examples of food chemicals that can cause problems are salicylates, amines, glutamates, sulfur/sulfites, MSG, Aspartame, food dyes, oxalates, benzoates, nitrates, preservatives such as BHT, BHA and TBHQ.

http://www.plantpoisonsandrottenstuff.info...troduction.aspx

I had a really good link for explaining the various chemicals..but I cant find it right now.

Anyways, these chemicals can cause symptoms of ADD, Bipolar, Aspergers, etc.


Rachel

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I've heard about a physical therapist in Portland, I think his name is Joe Keeney, who is doing therapeutic bodywork to help heal leaky gut caused by gluten intolerance. Let us know if you find him and try it out.

Also, continuing problems can be caused by overgrowth of bad bacteria or protozoa. If this is the case, probiotics might help.


Gluten free 3/07 self diagnosed

Specific Carbohydrate Diet 4/08--yes, it works.

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