Am I Really Celiac

[billmac]

Hello all.............first time poster and I am well and truly confused by all this and am seeking information from those with experience of this disease. If I give you a little history hopefully you can point me in the right direction and fill in some blanks. A couple of years ago a blood test revealed low B12 and iron. This led to a couple of tests which showed intrinsic factor antibodies and parietal antibodies present. I mentioned to my doc at that time that I had been having loose or small stools, sometimes very light coloured and nearly always floating. This led to me having a 3 day faecal fat test which was fine and clear of undigested fats being passed. Curiosity and subsequent internet research on why the doc would order that particular test caused me to come across mention of Coeliac disease. While looking at Coeliac disease I came across Dermatitis Herpetiformis (including a few photos) as a symptom associated with celiac. This hit me like a bombshell...... I had been suffering an excruciating itch and rash in very specific areas for a couple of years. Itching and small little blisters (which when scratched and broken left open little craters) came and went on my knees and elbows, the inside of my forearms, the back of my head and particularly across my buttocks. What I had appeared to me to be identical with the photos I saw. It never covered a particularly great area. This then led me to having a gastroscopy which included "distal duodenal biopsy' (doesn't mention number of samples) which said there were "no features of Coeliac Disease present". Genetic testing followed which reported "Genotype susceptible for Coeliac disease". I then had a couple of blood tests which reported

"Gliadin Iga Abs >100 U/mL"

"tTG IgA/IgG 300 U/mL"

"Endomysial IgA Abs detected"

and the report states that that is "strongly suggestive of Coeliac Disease".

Now I am 60 years old and rather set in my ways and the gluten free diet is a real pain to stick with. I have been on the strictly gluten free diet for over three months now, but while the rash and itching disappears, it keeps returning while I still somewhat have the bowel looseness. So now I'm starting to think perhaps the docs have got this all wrong (wishful thinking?). I have seen another test that requires a skin sample to be taken and biopsied and that is a definite diagnosis for Dermatitis Herpetiformis. For some reason my skin doc says this is unnecessary as the other tests confirm the disease. Do you think I should push for this additional confirmation? I would be really grateful for any thoughts from those who have been through the mill with this disease.

many thanks,

Bill

[maile]

Hi Bill,

if the additional diagnoses will help you stick to the diet then it would be worth it. the re-occurrence of the rash and loose bowels may indicate that you are getting small sources of gluten (hidden or cross contamination (cc)) in your diet.

Others who are much better versed in the intricacies of celiac disease will be along soon with suggestions good luck

[rinne]

I appreciate the "wishful thinking". Hi.

Getting a celiac diagnosis is generally not to easy, read through some of the histories (at the bottom of each person's posts) and you will see years of illness before a diagnosis. Have you been healthy up to this point, other than the rash?

[happygirl]

You can always take your results and lab work to another GI for a second opinion. Given that the tTG and EMA (very sensitive/specific tests for Celiac) were both positive, your symptoms/history, positive genes, and your first doctor's interpretation of results, it is pretty darn likely you have Celiac.

Ask your doctor for local resources - support groups, dietitians, etc that would be helpful to you, too.

[Fiddle-Faddle]

We've all been there with the wishful thinking!

Most of us have also found that those first few months "gluten-free" were only gluten-lite, as it took most of us many months to figure out the ins and outs of gluten. It's very easy once you've figured it out, but it IS a steep learning curve.

The problem is that there are many "hidden" sources of gluten, in foods you'd never expect to contain gluten.

For example:

1) SOY SAUCE (most contain wheat--La Choy is safe, as is San-J WHEAT_FREE tamari (they make gluteny ones, too so read carefully)(most Chinese restaurants are OUT)

2) Rotisserie chickens (most are marinated in soy sauce--Costco's is safe)

3) Rice Krispies and Corn Flakes (contains barley malt), also corn flake crumbs unless specifically labeled "gluten-free")

4) deli tuna and chicken salads (contain breadcrumbs!)

5) Corn tortillas and chips at Mexican restaurants (most fried in the same fryer as the flour tortillas)

6) "lite" ice creams (contains wheat starch)

7) surimi ("crab stix"--most brands contain wheat starch

8) restaurant burgers and many pre-made frozen burger patties (many contain bread crumbs as filler)

9) Almost all restaurant sauces and restaurant fish and even meat dishes (sauces thickened with flour; fish dredged in flour before cooking; most restaurant chefs dredge meats in flour before browning as it improves the color)--you must ask for a gluten-free menu and/or speak with the chef. Real pain, I know, but otherwise you end up glutened and not even knowing it.

10) MANY bottled sauces, salad dressings, even sauce mixes and potato dish mixes (READ LABELS )

In addition, most celiacs need to at least temporarily go off all dairy products, as casein (the protein in milk) can cause similar symptoms as the gluten, and gluten-damaged villi don't produce the lactoses necessary to digest the lactase in milk. The good news is, once your intestines have healed, you can probably add dairy back to your diet. (Some can't, though )

I don't mean to suggest that you are lying or sloppy in your approach to gluten-free. It's just that, with 5 college degrees between me and my husband, it STILL took us several months to really know exactly what we were eating!

[sugarsue]

It is my understanding that Dermatitis herpetiformis is another form of celiac disease and a positive biopsy confirms celiac. I am allergic to wheat that comes with intense itching. I find that being gluten free is worth the trade off. Good luck to you!!

[billmac]

Many thanks for the replies and helpful information. I think I have been pretty strict with the diet, reading labels (even those on vitamin supplements) carefully etc. I am a pretty plain food eater and my diet is what I would consider to be well balanced. No red or processed meats (only chicken and fish {no flour}), plenty of fruit and vegetables, gluten free cereals with soy milk, while the only dairy I consume is a little milk in my coffee twice a day. I do not eat sauces and condiments with my food and I have not eaten any pastries, ice cream etc for a couple of years. My general health (apart from prostate cancer) has been excellent, although despite my relatively good diet, I have always had a constant battle to keep my weight down. I have never suffered any abdominal discomfort although I will say I do seem to produce a lot of gas both up and down. Once a week I will eat restaurant cooked fried rice so perhaps I am getting a little soy sauce in there, while the chicken I normally consume is retail rotisserie cooked so perhaps that's a hidden source. Peanut butter is a little illicit pleasure but its labeling does not mention gluten. Had my gastro biopsy revealed villi damage I suppose I would have been content with the diagnosis but as I said the only problem I seem to have is this intense blistering rash (that waxes and wanes) and somewhat loose stools. On a side note I have just noticed that a bottle of soy sauce (from a large, reputable company) my wife has in the cupboard states that it is gluten free while the list of ingredients mentions it contains wheat products. Is this possible? I have noticed mention of soy. I consume soy milk with my gluten free cereal.............does soy milk have the same effect as wheat, barley and rye?

Again, many thanks to all,

Bill

[Tallforagirl]

...I then had a couple of blood tests which reported

"Gliadin Iga Abs >100 U/mL"

"tTG IgA/IgG 300 U/mL"

"Endomysial IgA Abs detected"

and the report states that that is "strongly suggestive of Coeliac Disease".

Now I am 60 years old and rather set in my ways and the gluten free diet is a real pain to stick with. I have been on the strictly gluten free diet for over three months now, but while the rash and itching disappears, it keeps returning while I still somewhat have the bowel looseness. So now I'm starting to think perhaps the docs have got this all wrong (wishful thinking?). I have seen another test that requires a skin sample to be taken and biopsied and that is a definite diagnosis for Dermatitis Herpetiformis. For some reason my skin doc says this is unnecessary as the other tests confirm the disease. Do you think I should push for this additional confirmation? I would be really grateful for any thoughts from those who have been through the mill with this disease.

many thanks,

Bill

Hi Bill,

I had very positive blood tests, and even a very positive bowel biopsy, and still wondered for a while if the diagnosis was correct, so I know where you are coming from.

As others have said, the tTG and EMA are very accurate as far as diagnosis goes, especially given that your tTG was so high (according to the titers on my test, below 20 is normal, so 300 is off the chart). If you have the skin biopsy for DH and that is positive, that is an even more definite diagnosis of celiac disease. Those diagnosed through skin biopsy for DH aren't even referred for a gut biopsy, because it's that definite, if you have DH, you have celiac disease.

Maybe it's something to consider. The more positive test results you have, could make you more likely to stick with the diet.