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helenabbadi

Still Miserable!

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Hey ya'll! Well I'm going to vent! I was diagnosed 2 months ago and have been gluten free ever since, but I'm not feeling any better! I also have allergies to milk, cheese, eggs (yolk and white), yeast, tomatoes, beans. Iam also allergic to dust mites. I have GERD. I take aciphex for that, and singulaur for my allergies! I am always severly deficient in vit D when my blood work comes back( I would go tanning but I can bearly move) so I take supplements for that! I just ordered some aloe vera juice to help with my gastritis (i've read that it helps with bloating and healing of the stomach).

I really dont know what to do anymore, I've been to so many doctors over the past 2 years, Gastroenterologists (sp?), allergists, even alternative medicine doctor. None of which have really helped! I have been tested for thyroid (neg), and my CBCs are always normal! I have had so many procedures and most come back negative.

My symptoms are as follows:

extreme fatigue

brain fog

trouble concentrating

swelling numbness around the eyes

Painfull joints

double vision

Numbness all over my body

tingeling in the feet

Bloating (five months pregnant type)

Trouble breathing

All of those symptoms are very debilitating and have forced me to quit my job and pretty much quit my life!

Anyone suggestions? I'm about ready to give up! And the first thing I would do is go get a HUGE cheeseburger and milkshake from steak n shake! LOL

Well I hope you all have a better day than me!!!

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Sorry you are having bad times. One thing - when you say your Thyroid is normal - have you got the papers there ? What Thyroid test was done and what are your numbers? I believe you are legally entitled to receive those results in writing. You may have to pay an admin fee now for them to search for you - but in future - at the appt - make sure the Dr hands them over.

I see many people with HypoThyroid - suffering for years - cos their Dr has only tested TSH and told them their result was 'normal'.

Also - has B12 been tested ? Pins and needles feeling is often a low B12 symptom.

Is your house completely gluten-free ? Have you checked EVERYTHING ? Like pet food, shampoo, makeup, wooden utensils, shared toasters etc

Hope this helps a little.


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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I don't have my results with me, but I've had three seperate thyroid test, TSH, T4, and T3 and the results were all within normal limits! I'm pretty sure my B12 levels are within normal limits too! I threw out all my shampoo and makeup and bought all new gluten free stuff!

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are you on a strict diet of healthy foods & no gluten-free bread & goodies?

are you avoiding all your known allergens - at least the food ones?

I would go to a basic few foods & do an elimiation diet. Are you drinking diet sodas? any artificial sugar? those are big no no's.

start taking a sublingual B12, even with a level that is okay. also did you check your meds to make sure they are gluten-free? When you have been gluten-free for awhile, if you are eating a healthy diet & exercising etc. you should not need those meds any longer...

oh I see in 2006 you were B12 low, you need to take that B12 for the rest of your life...

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I know this is the one of the worst diagnosis ever. Just as you get one thing working right another shuts down. Your symptoms sound like extreme vitamin defenciencies to me. Since you have been gluten free for only 2 months you could not possible be gaining the nutrients you need yet. I hate to say it but it may take up to a year or more for your digestion to work properly. I know you don't want to even think about another dr visit, but try and see an internal med dr or general practice and ask for your vitamin levels to be checked. Specifically Thiamin (B1), D (all of them), and C. If these are low, which they more than likely are then you may need to be supplementing with IV or liquid vitamins. I also have Sjogren's in addition to the Celiac diagnosis, which explains the eye symptoms for me. (diagnosed by a neuro-opthomoligist)

Celiac Disease and food allergies have to be one of the hardest things to deal with because you have to think about it every waking hour. If you need to vent, do it. Do not bottle it up. Finding ways to cope are important. I would love to say that just following the diet is going to make everything better, but that more than likely will never be the truth. :(

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Would you mind posting your thyroid results? There's a huge difference between normal and optimal levels. Problem is, most docs don't know their butt from a hole in the ground when it comes to thyroid, let alone what optimal levels are. Have you had TPO and Tg antibodies tests run?

Have you been tested for dysbiosis or candida? Both can do a number on your system. How's your ferritin level? Do you smoke? If so, then did you know that smoking raises the RBC, hematocrit and hemoglobin counts so that you can appear normal when you could really be anemic?

And tanning beds aren't the same as good ol' sunshine. Take that 15 minutes or however long you usually spend on the tanning bed, roll up your sleeves (weather allowing) and get some sun exposure. No sunscreen!

I understand your frustration. I'd seen 4 doctors before one of them was finally astute enough to test for nutritional deficiencies AND test my FreeT3 and FreeT4. The rest either thought the symptoms were all in my "pretty little head" or blamed it all on perimenopause (and then refused to run hormone testing). *growl*


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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Just so you know, ACIPHEX causes B12 deficiency as a side effect. You might look into getting B12 w/ folate shots in the rumpus until you feel better. They aren't too terribly expensive, and you can do them yourself.

Also, you might look into Cod Liver Oil pills for your vitamin D - it is more natural and easier to absorb than other supplements. If you're not absorbing your nutrients well, of course, supplements will go right through you.

I'd take digestive enzymes with meals, and consider Betain HCI as well (increases stomach acid). I was not digesting anything at all until i started doing those things.

good luck.

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You may want to consider testing for Lyme Disease....as these are all common symptoms.

Testing is very unreliable but there are a few very good specialty labs...such as IgeneX. False negatives are still common but less likely when using a lab with better tests (higher sensitivity).

Many people here with those ongoing symptoms who have chosen to persue testing have been diagnosed with Lyme.

Good luck in finding your answers.


Rachel

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