[Daisy]

Hi Everyone,

I'm new here but I have a few questions that I hope you might be able to help me with. Any input or advice on my situation would be greatly appreciated!

Someone told me to look into CD as a possible reason for my troubles and it does seem to fit (to some degree) but I'm not sure if I totally understand it. I see my Dr. (GP) tomorrow and I want to ask her about it but I'm just not sure at this point.

This is a bit embarassing to talk about but here it goes....

I've had off & on stomach troubles for years. I've been told by a couple of Dr.'s that it could be IBS but they didn't know for sure and nothing was done. I have suffered with both generalized and localized abdominal pains, pain and nausea after eating, fatigue and weakness, muscle cramps, tingling in arms and legs, a bloated or swollen feeling abdomen, frequent BM's, weight loss (15 lbs. over past few months), and the worst symptoms is SEVERE stomach pain and cramping that will sometimes last for a few hours and is only relieved by BM but never happens right away. It always takes and hour or two before I get any relief and then I have to deal with diarrhea for the next hour or two. This severe pain and cramping has caused me to almost pass out a few times and is becoming more frequent. I have noticed for a while that this pain seems to be triggered by something that I have eaten. I haven't kept track off all the triggers but I do know that certain cold cereals have set it off. I talked with a few people I know who have IBS and their's doesn't seem to behave like mine at all.

If I do ask my Dr. about CD what type of exam or tests should be done?
Thanks in advance for any helpful replies!

[NancyM]

It might be Celiac, or perhaps gluten intolerance. I had the cramping and frequent BMs like you describe and it was relieved by a gluten free diet. I also discovered I have a casein (dairy protein) intolerance and that alleviated another batch of symptoms.

You can only get a CD diagnosis from a doctor after blood tests and endoscopy while still on a gluten containing diet. Many of us didn't believe negative results and tried the GF diet anyway, and had success. So I think you'll find a lot of people don't think the current "mainstream" doctor testing is really sufficiently identifying those with issues to gluten.

But if you're open to self-diagnosis you could try an elimination diet yourself and see if you get better. Since it can take up to a day or more for food intolerance symptoms to hit, you have to keep careful notes. Also, enterolab.com does stool lab testing for gluten sensitivity.

Sorry to hear about the pain. I well remember sitting on the toilet sobbing from the pain.

P.S. Never feel embarassed to discuss toileting things with celiacs. We spend a lot of time talking about these things and pondering the mysteries of the intestines.

[mistofviolets]

It sounds like a definite possibility. Corn could also be a culprit. (Its in everything...gluten is definately easier to avoid)

I'd suggest calling your dr and demanding the full celiac panel (look under the top post The Gluten File, it has a link to the diagnostic tests. If you can't find it post and one of us will cut and paste for you)
After the blood is drawn, if you personally don't need/want a biopsy for confirmation then start a gluten free trial. But do it right...get rid of all the gluten stuff (put it in a big box to donate later) and go totally gf for a few weeks. Keep a diary during that time to see if you can really see a difference and to track down any lingering intolerances. Milk and corn and eggs are other big possibilities.

[jccgf]

Hi Daisy,

Your symptoms sound familiar to me. I don't have celiac disease, but do have gluten sensitivity. I think it is a good idea to have the celiac panel run in case you have a positive result. But, if the blood tests are all negative... I would encourage you to read some more here and do a dietary trial .

If you are having tingling in your legs and arms...that may be peripheral neuropathy. This can be a result of gluten sensitivity, and also of B12 deficiency, among many things. Since B12 deficiency itself can cause GI symptoms, I suggest you ask your doctor if he will test you for that as well. B12 deficiency, methylmalonic acid, homocysteine. Be sure to get your lab results yourself. You want a B12 level that is upper range. An elevation of methylmalonic acid or homocysteine can indicate a B12 deficiency even with normal B12 levels. There is a B12 deficiency thread in TGF, too.

THere is a great AAFP article called Detecting Celiac Disease in Your Patients on the first page of The Gluten File... it is my favorite review article.

Cara

[Daisy]

Thanks so much for all the advice. I got some helpful information form the Gluten File that I will take to my appointment tomorrow. I know they are working on a referral to a GI specialist for me so if she doesn't want to do the testing, I'm sure he will.

Cara, I pulled out some of my previous labs and I found a B12 test from May 2006. It was 390 and it says the normal range is 200-1100. Is that too low?
I also looked up a few others after reading Table 3 in the article you mentioned. It gives the rountine blood screenings that could give early detection to malabsorption resulting from Celiac Disease. Here's what I found:

Alkaline Phosphatase = 45 -- normal range 42-121
Protein Albumin = 3.8 -- normal range 3.2-5.5
Folate = 15.7 -- doesn't give a normal range

As far as anemia goes, I'm not sure....my WBC, RBC, Hemoglobin and Hematocrit have all been slightly low or borderline low for quite some time. I also had a hematologist tell me a few months ago that my iron stores are very, very low. I even had Ketones in my urine for a while that was assumed to be from malnutrition when my weight drastically dropped.

Anyways, thanks again for all the input and I will let you know how things turn out with my Dr.

[jccgf]

Originally Posted by Daisy

Thanks so much for all the advice. I got some helpful information form the Gluten File that I will take to my appointment tomorrow. I know they are working on a referral to a GI specialist for me so if she doesn't want to do the testing, I'm sure he will.

Cara, I pulled out some of my previous labs and I found a B12 test from May 2006. It was 390 and it says the normal range is 200-1100. Is that too low?
.

In my opinion, YES, 390 is TOO LOW. Japan uses a cut off of 500. I have a few articles on B12 deficiency that says anything under 400 should be considered suspicious, especially if neurological (or other B12 deficiency symptoms) are present.

My B12 level was 294 (150-1100) after 3-5 years of symptoms, that had really started to progress in scary ways the last six months. I've always wondered what my B12 was at when I first started having symptoms. If you haven't had a chance to read the B12 deficiency and B12 symptoms pages on TGF, take a quick look....way down at the bottom of the right bar. I think there is at least a chance that some of your symptoms might be related to B12 deficiency. You might want to ask for the additional tests (methylmalonic acid and homocysteine), but even if those were normal, I think taking 1000mcg daily of oral methylcobalamin might help. Always with a multivitamin with good B-complex coverage.

With the really low iron, too, you are a good candidate for celiac screening. Try to be sure they include the antigliadin antibodies, now considered optional. For some of us, the antigliadin antibodies were the only clue we had.

Cara

From: Laboratory Diagnosis of Vitamin B12 and Folate Deficiency
A Guide for the Primary Care Physician
Christopher F. Snow, MD
"As discussed above, patients with Cbl deficiency may have overt neurologic disease in the absence of hematologic findings. Patients with neurologic symptoms and signs and a normal complete blood cell count
require a modified diagnostic approach because of several considerations. First, folate deficiency is an
unlikely cause of neurologic disease. Second, the neurologic disease of Cbl deficiency may be irreversible
if treatment is withheld or delayed; because Cbl therapy is non-toxic, the risk-benefit ratio favors treatment in questionable cases. "
From: AAFP on Vitamin B12 Deficiency
"Diagnosis of vitamin B12 deficiency is typically based on measurement of serum vitamin B12 levels; however, about 50 percent of patients with subclinical disease have normal B12 levels."
From:
Disorders of cobalamin (Vitamin B12) metabolism:Emerging concepts in pathophysiology, diagnosis and treatment Lawrence R. Solomon, 2006
"Since cobalamin, methylmalonic acid and homocysteine levels fluctuate and neither predict nor preclude responses to cobalamin, cobalamin therapy is suggested for symptomatic patients regardless of the results of these diagnostic tests."

[Nathan1097]

Hello. I'd like to talk to you more because I am having similar symptoms!

I get what feels like a partial blockage - severe abdominal pain, shock, fainting, sweating, vommiting for six hours until I finally pass out and am able to sleep. These episodes were happening every month then week... gastro doctors were no help- until I started a gluten-free, caffiene-free diet. I am not losing weight now, but I am on other medications that have a gaining effect. I was underweight 2 years ago, anyway.
I'd like to talk more with you about your symptoms. I was in the ER many times with morphine my pain got so bad- hospitalized and colonoscopies and CT scans and all kinds of things done... and all they come up with is "illeitus of unknown origin".

Jennie