I'm Prepared To Be Frustrated

[itsmaryj]

Hi! I guess before I ask questions, I should introduce myself. My name is Mary, I'm 55 and I was diagnosed with T1 diabetes at age 45 (I'm a late bloomer:). At the time of my diagnosis, I had gone from 118 lbs down to 90 without even trying (impressed myself!), although I knew something was wrong. At the time, the weight loss was contributed to the diabetes, but in hindsight I'm wondering if it could have been Celiac in conjunction with the diabetes diagnosis (both auto-immune).

A few years before the diabetes dx, I found I could no longer eat breakfast without feeling sick. I found that I had reactions to many foods--lactose intolerance, strong reactions (immediate histamine-type reactions such as intense itching, swelling, eczema) to milk, eggs, tomatoes. I've been skin tested and all results were negative. At first I found that breakfast was especially bad for me (but of course, many breakfast foods include milk and eggs), but as I observed more closely I found that over the years the reactions became worse and occurred at any time.

Because I had experienced a lot of frustration with doctors before my diabetes dx (GPs ignored high blood sugar tests for years, and finally sent me to an endocrinologist who put me on insulin immediately), I have hesitated to consult MDs over my problems. The negative skin tests were frustrating because I obviously have problems--even my co-workers can see the reaction occurring if I eat something that has milk or tomatoes (egg reaction is slower). I'm sure many of you have had this same kind of frustration.

Anyway, it's been at least 13 years of miserable itching, abdominal distress, migraines. I've self-medicated with Claritin, Sudafed, Benadryl (only at night), and tried to avoid the foods when possible, unless I am suffering from a lack of self-control (pizza). I also experience right-sided (mostly) abdominal pain, and have for at least 30 years. I also have problems with diarrhea.

Three years ago I had a bowel obstruction (intussusception near the ileocecal valve), to which no definite cause has been found, but on colonoscopy there were erosions which subsequently healed. This, interestingly, is in the right side of the abdomen. I should also mention that every several years I experience a time where my system just won't tolerate eating, and I lose several pounds (usually about 10, which is quite a bit for me).

I'm an RN in an operating room setting, so I'm not totally clueless concerning medicine. Even though I work in the healthcare field, I don't have much confidence in some doctors.

Thankfully, I finally brought myself to talk at length to my endo, who on his own suggested ordering Celiac testing. Mostly I'm nervous because I'm so afraid of negative tests, and a shrug from the docs. I'm tired of taking anti-histamines, decongestants, inhalers--and avoiding foods, but still feeling bad. Sounds stupid to hope that a test is positive, doesn't it? I don't know what I'll do if it is negative. I just won't know where to go--

Thanks for listening,

Mary

[Ursa Major]

Hi Mary, and welcome to this board. Of course it's obvious what you ought to do if your test results are negative! Those tests are not very reliable, and yield many false negatives. That goes for the blood tests and the biopsy. So, after testing is finished, you need to try the gluten-free diet, no matter what the results. Because it is possible that it isn't celiac disease anyway, but a gluten intolerance, which wouldn't show up on conventional tests.

Either way, the treatment is the gluten-free diet. The diet is the best test anyway, as it will be easy to see if you feel better on it or not.

If your tests come back negative, you will always still have the option of testing with Open Original Shared Link

I hope you figure it out, you have suffered long enough!

[Nancym]

You should definitely get tested for celiac disease because it might be what caused your T1 in the first place. Celiac goes hand in hand with autoimmune diseases. If you don't care about getting a "gold standard" diagnosis and all the hassles and false negatives that go along with it, you might want to consider Enterolab.

But you should also realize that IgE allergies and IgG food intolerances are two different things. Food intolerances are a delayed onset thing, occurring 30minutes to 4 hours or so after eating and lasting for up to a week. IgE allergies are the ones that hit immediately and response to antihistamines.

Good luck! Take care of yourself.

[hathor]

But you should also realize that IgE allergies and IgG food intolerances are two different things. Food intolerances are a delayed onset thing, occurring 30minutes to 4 hours or so after eating and lasting for up to a week. IgE allergies are the ones that hit immediately and response to antihistamines.

In my own mind, I'm not quite sure of the distinction between delayed onset allergies and food intolerances. Is there one or are we simply dealing with different terms for the same thing? I've seen delayed-onset, IgG-mediated reactions (I think I have the terminology correct ) called allergies. But these reactions will not show up on skin prick testing, which only finds the IgE stuff.

More and more, with my web research and now a month of going gluten-free (Enterolab is now reviewing my, uh, contribution), I'm thinking what I may have is a delayed-onset wheat allergy. I don't see lists of celiac symptoms including some of the things that have cleared up, like my persistently runny nose and occasionally extreme sneezing fits (watering eyes, sinuses going full bore, sneezing constantly for about five minutes). Intestinal complaints are coming around, I think, but slower. So I don't know if this would make me a candidate for "non-celiac gluten sensitivity" (if this is a separate thing) or whether the Enterolab testing would show it.

For delayed-onset allergies, I see some places say you need blood testing to find them. Others say that blood testing is inaccurate and the best thing to do is to eliminate or challenge with certain foods and see what happens to your symptoms.

Anyway, what I am saying is that your "allergy" testing has not ruled out allergies.

If stuff like dairy, eggs, and nightshade vegetables cause a reaction, then don't eat them! You don't need a doctor's OK. Same goes with gluten, of course.

About the pain on the right side of your abdomen, is it around your gall bladder? Does it flare up in response to particular foods? When you say you go days unable to "tolerate" eating, what are your symptoms precisely? I ask because I used to go through times that, usually in response to high fat foods, I would get pain in my right abdomen (a little above waist level) and food would just sit in my stomach. It would not digest. I would go days before my stomach would digest the meal and I could eat again. I learned that eating anything at all would just prolong the discomfort. I was checked twice for gallstones, but they found nothing. But I was never able to get testing while I was suffering.

Anyhow, just yesterday I ran across one thing that sometimes happens with celiac called "sphincter of oddi dysfunction" which yields the symptoms of gall stones without the stones. Basically, the bile duct gets squeezed and bile doesn't go to the stomach. I can't say that I think too much of what I've read about the medical treatment of the thing, if this is what I have had. I think it makes more sense to avoid the foods that hurt me.

I was just curious if you had the same symptoms.

Have you ever considered going on an elimination diet? You are reacting to what you are eating but you don't know what all foods you need to avoid. Here is one version: Open Original Shared Link

It is a vegan version; you can google and find other versions, if you prefer. But given your Type 2 diabetes, a vegan diet is something you should investigate. Are you familiar with the work of Dr. Barnard? A study he published last year showed that his diet worked better than the standard recommendation of the American Diabetes Association. Open Original Shared Link

Dr. Barnard has a book out. Open Original Shared Link

Dr. Pritikin's similar diet has also been demonstrated to be of benefit with diabetes. Open Original Shared Link (you can see references to the particular studies here)

Dr. McDougall has also successfully brought blood sugar under control with this diet. I don't believe he had published anything on the subject (unless you count newsletter articles). But you can read case histories on his web site and articles such as the following: Open Original Shared Link (lists the studies he is relying upon)

Getting back to celiac, you say you wouldn't know where to go if the testing is negative. As mentioned by someone else, you can go to Enterolab. They can find out if your body is reacting adversely before your body has reached the level of damage required to test positive on the celiac tests doctors usually order. It is frustrating that the testing hasn't been validated by a published, peer-reviewed study. But it makes sense and there aren't any side effects to it.

Even if everything is negative, you can still try going gluten-free and see if you feel better.

Also, you can get blood testing for allergies. Doctors can do this and I've even seen places you can arrange for this yourself. I haven't done this because (1) I avoid doctors when I can and (2) the thought of using a lancet to get some blood from myself creeps me out. I imagine holding the thing by my finger and freezing But being a nurse, you can probably handle this Google on "home allergy testing."

[hathor]

I forgot to mention that Enterolab also tests for dairy, egg, soy, and yeast sensitivities.

[itsmaryj]

Thank you for the welcome! And thank you for the information. I wasn't aware that one could be sensitive to gluten, yet test negative (aside from eating gluten-free for sometime before the tests). I bookmarked the Enterolab site, which sounds very interesting.

The closest I've come to eating gluten-free is when I've gone VERY LOW CARB because of diabetes (takes the guesswork out of bolusing), which of course means I've cut out bread, noodles, etc. Although probably not completely gluten-free, I do feel much better when I'm eating that way--not so much bloating, etc. What causes me a problem with eating so few carbs is that it can't last long for me because it is so easy on insulin to go hypoglycemic, which of course requires me to eat carbs.

When I had the bowel obstruction, a follow-up colonoscopy was done and concluded that Crohn's disease should be ruled out. I've never had any more testing concerning Crohn's. But if my tests for celiac comes back negative, maybe I'll look into Crohn's, as well as go on a gluten-free diet myself. Unfortunately, I know myself well enough to know that eventually I will give in to pizza or something else and won't take the diet restrictions seriously. On the other hand, if I have a diagnosis, I will easily take it seriously and won't be so apt to "cheat."

Again, thank you for your help!

Mary

[itsmaryj]

Thank you! The information on the Enterolab site was very encouraging. Now I'll know what to go to next, if the antibody test comes back negative.

I feel very fortunate to have found this forum!

Mary

[itsmaryj]

Not only would the testing be easy for me, being a nurse, but as a diabetic I poke myself 10-20 times/day. Doesn't phase me! But I don't trust the RAST testing (blood) either, because my son also had a definite problem with milk, and he tested neg. on the RAST test. In my recent studies of these problems, though, I wonder if my son's rash could have been a result of Celiac, also. From early childhood (age 3 on) he had a severe rash (eczema?) on his arms & legs, until he discontinued consuming milk at about age 14 (within 4 days of discontinuing, the rash disappeared). Now as an adult, he avoids most milk products (but not all), and doesn't have the rash.

Our bodies are crazy things, huh?

Mary