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FootballFanatic

How Do You Keep Going When You're Not Getting Better?

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First of all, I am not ready to try and eliminate soy yet because I already only have 4 meals that I switch between and a few snacks, so I would just shrivel away if I eliminated soy at this point, PLUS, I have so many friends who didn't have to eliminate anything except gluten and temporary dairy/fatty foods...they just took a LONG time to heal.

But I'm getting SO SICK AND TIRED of hurting or feeling nauseous or having such high anxiety.

If you've been through this what got you through? I'm getting really frustrated, it is such a HUGE sacrifice to go gluten free and get nothing from it.


10-06 Diagnosed Urinary Tract Infection (Allergic to Cipro, Bactrim, Macrobid, Doxycycline, Monocycline, Penicillin) - This UTI is still present with no symptoms.

10-06 Diagnosed "Acid Reflux" (Nexium didn't work)

12-06 Endoscopy diagnosed Gastritis (Negative Bioposy)

12-06 Negative bloodwork for Celiac Disease, Diagnosed "Gastroparesis" - Started Zelnorm

1-07 Diagnosed "IBS-C" - Still taking Zelnorm

3-07 HIDA scan to check gallbladder which was fully functional.

3-07 Zelnorm taken off market, started Domperidone

4-21-07 Emergency Appendectomy (FUUUNN!)

7-24-07 Enterolab results came back positive

Gluten Free since that night....

...Still not feeling great.

"Don't expect constant success, but strive for constant growth."

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Boy, I can relate. I'm so sorry you're having such a hard time. My son and I just got our Enterolab results back a couple of weeks ago, and I'm feeling some of the same already. It's so hard to keep pressing on when I still feel crummy so much of the time, and the pressure to feed my family - especially my newly gluten-free 15 yo son - gets overwhelming.

It helps me to read and reread the comments of those who took a long time to feel better. I haven't been going nearly as long as you have, though. Still, I need to keep being reminded that not feeling better doesn't mean this is the wrong thing for us.

I'm right where you are on the soy, too. We reluctantly went off casein a week or so after the gluten, but soy? We depend more on Asian food than ever - seems like we'd be down to meat and potatoes w/o gluten-free soy sauce.

I wish I had some better advice, but anyway, hang in there and know you're doing the right thing for your body by going gluten free.

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It sounds to me like you need some more nutrients and fat in your diet, especially with the joint issues. How do you feel when you eat avocados? I make guacamole almost every day when I'm not feeling well, the fats in avocado really help my stomach feel better. You can use gluten-free chips or carrots and cucumbers or whatever other veggies you like for dipping. I put my chopped up avocado on scrambled eggs and add salsa, sounds wierd but it's yummy. And are you taking a vit B supplement? I started feeling much better when I started that. I usually eat eggs for dinner instead of breakfast, too, because my stomach only tolerates certain foods in the morning, very strange.


If you're going through hell, keep going. ~Winston Churchill

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It's really funny that you recommend avocadoes because I'm deathly allergic....:(

Anyway I'm trying to load up on calories for the malnutrition.


10-06 Diagnosed Urinary Tract Infection (Allergic to Cipro, Bactrim, Macrobid, Doxycycline, Monocycline, Penicillin) - This UTI is still present with no symptoms.

10-06 Diagnosed "Acid Reflux" (Nexium didn't work)

12-06 Endoscopy diagnosed Gastritis (Negative Bioposy)

12-06 Negative bloodwork for Celiac Disease, Diagnosed "Gastroparesis" - Started Zelnorm

1-07 Diagnosed "IBS-C" - Still taking Zelnorm

3-07 HIDA scan to check gallbladder which was fully functional.

3-07 Zelnorm taken off market, started Domperidone

4-21-07 Emergency Appendectomy (FUUUNN!)

7-24-07 Enterolab results came back positive

Gluten Free since that night....

...Still not feeling great.

"Don't expect constant success, but strive for constant growth."

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Sorry you're not feeling better.

Couple ideas:

If you're still on medication, are you sure it's gluten free?

Are you sure that your vitamins and toiletries are gluten free?

Are you taking Vitamin B12 (sub-lingual)? It might really help...

Have you had your thyroid checked, especially autoimmune thyroid?

Have you been checked for diabetes?

Have you tried a true elimination diet?

I know you don't want to go off soy, but you could try it for a few days to see if it is the problem. If it is, wouldn't it be better to find out than to suffer more and more?

Good luck and hope you're better soon.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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It's really funny that you recommend avocadoes because I'm deathly allergic....:(

Anyway I'm trying to load up on calories for the malnutrition.

Ok, just kidding. Maybe use olive oil to lightly saute all your greens. Get some decent coconut oil to use for baking, and sweet potato tastes really good sauteed in coconut oil. Mashed potatoes with ground hamburger, and use the hamburger drippings to moisten the potato, that will up your calorie count and it tastes yummy.


If you're going through hell, keep going. ~Winston Churchill

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