Newbie With Questions, Please ?

[Nanjee]

Hello everyone. I am so glad to have found this forum !! Lots of questions - I hope I am not making a pest of myself :+)

I have had "IBS" for 20 years, but usually had it pretty much under control. I also have Fibromyalgia, but that ws always very much under control as well - it really didn't alter my life that much, except for an occassional flare. About 3-/12 years ago, I began to have diarrhea only, and severe stomach "spasms" or cramps. I put it off as my IBS in a huge flare.

Now, 3 years later, I am searching for what in heavens name is wrong with my upper intestines!!! I had the blood work done for Celiac - it was negative. Had an upper an lower scope done - Gasto said everything was fine - kind of dismissed me as "only IBS".

I am SO weak. I don't know what to eat !!! Last night I had a slice of French bread - I woke up at 3am with spasms in my upper intestines - and oodles of gas.

So today it is back to bananas and tea.

My question - if I am gluten intolerant - can this also lead to vitamin deficiencies ?

I have really wondered about Vitamin B12 - I am cold ALL the time - severe headaches daily - feel like I am in a fog. Severe muscle pain, dizzy and a very fast heart rate when I am up. I am so exhausted - I spend so much time lying down. This is NOT me !!! I was a go getter, and I don't know which way to turn anymore. Have any of you had anemia type symptoms before going gluten free ?

I was thinking of using the lab that tests your stool sample - to see what concluson they could come up with. My internist said if the blood work was negative- then I am not gluten sensitive.

If this sounds familiar to any of you - I would sure appreciated your input and comments. I hope to get to know you all a little better !!

Thanks so much for taking the time to read my post :+)

Nanjee

[kabowman]

What worked wonders for me was an elimination diet and a 4 week food diary with notes on symptoms and what you thought it was tied to...(gas, dh, bloating, fever, joint pain, lethargy, etc.) EVERYTHING! I started with plain meat, salt, pepper, & garlic...only. Plain fruits and veggies. celiac disease was rulled out - I had already been gluten-free for several months and refused to go back on for testing so I either have it or I don't; either way, I still can't have gluten.

I went through the IBS, all kinds of blood tests, EDG, Colonoscopy, etc. without any real progress or DX; still lots of pain, no energy, etc. for YEARS. I discovered my lactose/casein intolerance about 5+ years ago, I finally admitted that there was more and started the elimination. After about 3 months, I started the diary and that REALLY helped.

Now, for the first time in YEARS, I actually feel like my old self again. Most of my symptoms, including the joint pain and persisting low-grade fever are finally gone! Wow, I have energy. However, the list of foods I cannot eat is HUGE, but I feel great and I (and my whole family) are eating healthier than ever before:

-Lactose/Casein

-Gluten

-Soy Beans

-MSG

-Yeast

-Corn

-Vinegar

-Peanuts

-Almonds

-Garbonzo Beans

-Wine

I hardly miss those foods...if I forget, I just remember back to the last mistake (they changed an ingredient and I neglected to double check) that left me on the couch for a full day and in pain for the next 3 days.

I take multi-vitamin that is gluten/lactose/corn/yeast/soy free and 1000 MG of calcium per day. Per my doc, I also take B Complex Complete & C daily. I have always worried about getting enough vitamins. Just make sure that they are not making you sick too!!!!! Most contain some starch and my GI doc suggested I suppliment my Nexium with Priolosec - however, after the second time of getting sick, I read the ingredients! Starch!!!! I now read ALL meds ingredients.

Good luck and don't be discouraged!!!! It is for the best.

-Kate

[burdee]

I would highly recommend the Enterolab stool tests which also tests milk sensitivity (casein antibodies) even AFTER you have gone gluten-free for several months. From what I understand, blood tests can only detect gluten antibodies which have LEAKED from the small intestines into the blood stream. So those tests require that you've been sick with celiac disease long enough to develop a 'leaky gut'. E-Lab tests STOOL samples which would more logically have antibodies created in the INTESTINES.

If you have symptoms which are alleviated by abstaining from gluten, you most likely have gluten intolerance, symptomatic of celiac disease. I believe about 44% of celiacs are MISdiagnosed with the IBS label which is not a disease, but rather a catch all category for symptoms for which doctors don't understand and can't 'cure'. Like the average celiac in this country who is stalled from a celiac disease diagnosis for 11 years, I was misdiagnosed for 10 years with the IBS label.

Anemia, stomach cramps, diarrhea, fatigue, fibromyalgia pain, headaches and fogginess are ALL celiac disease symptoms. However living on tea (with caffeine) and bananas (high glycemic) can influence reactive hypoglycemic (low blood sugar) symptoms of dizziness, fogginess and faintness. I recommend you start substituting Gluten free foods for gluten containing foods you normally eat so you can avoid gluten. Then contact Enterolab for stool tests, if you want a diagnosis, so you don't ever have to consume gluten again.

BURDEE

[Nanjee]

Thanks so very, very much for your replies !!! I right now am going to have my hubbie get me some gluten free bread, and maybe some pasta - oh how I long for pasta !!! And some crackers - maybe ?

The Tea I am drinking is herbal tea - fennel tea or spearmint leaves - never caffiene for me !!!

I just keep getting weaker, and have hit a wall. I look back to 3 1/2years ago - I am a professional person !!! Now it is SO exhausting to just get washed up for the day.

Doctors just look at you - "must be IBS and chronic fatigue". AARRGGGHHHH !!!!

I will go ahead with the testing from Entero labs.

Thanks again for listening - it has meant a lot :+)

Nanjee

[cdevane]

Okay, I have read a lot hear and tried to understand it all, but I do have some questions.

Burdee, you amongst others have mentioned the Entero Lab tests. How do I go about finding more information about that?

I have been gluten-free (with some slips...still learning) for about three weeks and have noticed 70% of my "IBS" symptoms have disappeared. My Celiac blood test came back negative, as did the stool test that checks for malabsorbtion. But I am convinced there is some sort of connection. I know the easy answer would be just to remain gluten free if its working, but I honestly don't think I have that type of long term will power!

What sorts of other things are automatically eiliminated when you go gluten-free, besides wheat? And can that be tested for as a seperate allergen.

I would appreciate any input as I am convinced that my doctor's are not very knowledgable about this area and I am hesitant to do the big expensive tests (endoscopy, colonoscopy) if they are not really necessary.