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danaf617

Please Help Me Prepare For Another Dr. Appointment

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Hi all! :)

I've been sick with daily stomach pain, constipation & diarrhea since a night in December when I got violently ill. The only time I felt okay since then was the first 2 weeks my gastro had me on Librax.

I am now assuming gluten-intolerance based on Enterolab results and positive dietary changes. We've ruled out colitis & Chrohn's.

I've been gluten-free since the beginning of July and gluten-free/dairy-free since the end of July. As soon as I went gluten-free/DF, I immediately felt better and had about 4 weeks of feeling great!

Not so much anymore. :( Could be CC or something like that but all of my symptoms are back and pretty bad. I have made an appointment with my primary doctor and want to ask him for some tests. I'm kinda over my gastro... he swears I have IBS. :rolleyes:

I'm want to ask my primary dr. to order tests for parasites (stool test, right?), candida or yeast overgrowth, other food intolerances (blood test??), etc, or anything else that you can think of that might be the cause of my ugly digestive troubles. I'm so fed up with not feeling well!

I need your help to know exactly what to ask for. I have had success with having doctors do what I ask when I am informed and confident. Please help me help myself.

Thanks in advance!


dana

gi problems started 12/09

bloodwork: negative 3/10

enterolab: + for antibodies 6/10

gluten-free & DF 7/10 and eager to start feeling better!

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Ask your doctor if Welchol could be a possibility for you. It is a cholesterol lowering drug which has the side effect of helping stop diarrhea. It was a God sent for me until I went off gluten. (That problem has now disappeared.) You can take it as needed. Halt it when constipation sets in and begin again when stools loosen. I found just one pill a day worked wonders for me, upped my energy level, cleared my thinking and got me up and back to work when nothing else helped. Plus, it does have the side effect of lowering cholesterol levels.

He may want to run some blood tests along with prescribing it to check your cholesterol and triglycerides, which is the perfect opportunity to ask for the other tests you've been wanting.

Good luck. I know where you are at.

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Hi all! :)

I've been sick with daily stomach pain, constipation & diarrhea since a night in December when I got violently ill. The only time I felt okay since then was the first 2 weeks my gastro had me on Librax.

I am now assuming gluten-intolerance based on Enterolab results and positive dietary changes. We've ruled out colitis & Chrohn's.

I've been gluten-free since the beginning of July and gluten-free/dairy-free since the end of July. As soon as I went gluten-free/DF, I immediately felt better and had about 4 weeks of feeling great!

Not so much anymore. :( Could be CC or something like that but all of my symptoms are back and pretty bad. I have made an appointment with my primary doctor and want to ask him for some tests. I'm kinda over my gastro... he swears I have IBS. :rolleyes:

I'm want to ask my primary dr. to order tests for parasites (stool test, right?), candida or yeast overgrowth, other food intolerances (blood test??), etc, or anything else that you can think of that might be the cause of my ugly digestive troubles. I'm so fed up with not feeling well!

I need your help to know exactly what to ask for. I have had success with having doctors do what I ask when I am informed and confident. Please help me help myself.

Thanks in advance!

Okay, a couple of possibilities for your perceived relapse. No.1, many of the folks on this board undergo withdrawal when they quit eating gluten. Migraine, low energy/lethargy - I didn't experience it so I can't give all the symptoms, but it can really pull you down. No.2, after we quit eating gluten we sometimes discover that we have other intolerances - these are foods that have also made it through the leaky gut wall of your small intestine in a pre-digested larger molecule state which the body does not recognize as "self" and produces antibodies to. Until your leaky gut heals these will continue to be a problem. I am a perfect example of this - just consulted a nutritionist who has put me on a very powerful probiotic because I keep developing new intolerances! If your have intestinal damage you should quit eating lactose (the milk sugars found most extensively in milk, cream, ice cream) and maybe all dairy, to start with. Another common intolerance that goes along with gluten is soy, so you might eliminate that too. Your gut is still unhealed, so be kind to it and give it whole, unprocessed foods to start with, meat, veggies, fruit, rice, nuts, seeds - forget about replacing the gluteny foods you are used to eating for the first couple of months.

No.3, of course is the nutrient deficiencies brought on by lack of absorption in the gut that you do need to get your doctor to test for. Vitamins D, B12, A, K, folate, plus the minerals potassium, zinc, magnesium, ferritin (Iron); also you need your thyroid tested because gluten does a number on thyroid function.

Get these things sorted, and hang in there because it does get better; you generally have to wait about three months for it all to settle down, but it is so worth it.

Welcome to the board, and feel free to ask any questions that pop up :)


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Ask your doctor about being tested for SIBO and fructose malabsorption. There's also blood tests than can test for allergies (IgE), sometimes referred to as RAST or Elisa.

I have an odd one too - my body produces too much histamine and therefore it reacts to every food as if I'm intolerant to it. Med is helping but not fully recovered yet. Cramping, D, nausea, pain, etc. Not fun.


40 year old former foodie on a quest to feel better!

-IgE to oats and rye

-Diagnosed with
Colitis
via endoscopy/colonoscopy Oct '10

-Following
FODMAP
diet since June '10, Positve
SIBO
test, July '10

-Diagnosed
non-celiac gluten intolerant
June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)

-
Osteopenia
June '10

-
Gluten free
since July '09 &
Soy free
since December '09

-
Dairy free
since '06

-
IBS & Sjogren's
diagnosed '05

-
RA
diagnosed as a toddler

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Many of us become more sensitive to CC after we have been gluten free for a short while. You may have hit the nail of the head with that thought. What are you eating? Have you made your home gluten free? Are you baking gluten items for your family even though you are not eating them? Have you checked all supplements and any OTC or script drugs for gluten? Do you have gluten eaters in your home leaving crumbs around? Do you have a significant other who eats gluten and then get intimate without them brushing their teeth first? Do you have a pet that eats gluten food? Do you do arts and crafts or are you doing remodeling? Do you work around gluten like in a bakery?


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks for your replies. :)

@aderifield- Thanks for the suggestions. I should have mentioned in my original post that I'd like to heal and get back to normal without the use of prescription meds, if possible. I weaned myself off the Librax as soon as I could because I feel like it was just treating the symptoms (D and pain) without doing anything about the WHY part of all of it.

@mushroom- I am a HUGE believer in dairy-free at least until things are settled and healed. I only felt marginally better gluten-free but when I cut dairy out also, it was a huge improvement. I'm still 100% dairy free. I did experience withdrawals when I first cut out gluten. Unbelievable headaches for about 5 days, lethargy, moodiness, etc. It got better for me after about a week.

My next question was going to be about getting vitamin levels checked, so thanks for that! I'll add those to my list.

@kayo- thanks for the suggestions! I've heard a little about the SIBO and fructose malabsorption on this board.

@ravenwoodglass- I'm eating mostly whole foods and things I make. I'm not eating any food that I have not prepared. I did grab a cooked rotisserie chicken from the grocery store a few times a few weeks ago but cut that out since I started not feeling well again.

My home is not gluten-free. My hubby and 2 toddlers are still eating gluten and dairy. Although the only gluteny foods I am preparing for them is regular wheat pasta. No baking!!

My husband has been grilling our dinners and we cleaned our grill grate by running it at 650 for 45 min, like I read on here.

Other than making "real" pasta for them when I have gluten-free, all of our dinners have been gluten-free.

I have been buying Udi's bread and english muffins from Foods By George. Should I cut those out for now?

We've been super careful about kissing. ;) And yes, I've checked my vitamins and OTC meds.

There have been crumbs left around but I am very careful about cleaning my kitchen area and hands before preparing my food. No pets.


dana

gi problems started 12/09

bloodwork: negative 3/10

enterolab: + for antibodies 6/10

gluten-free & DF 7/10 and eager to start feeling better!

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