Would It Be Beneficial For Me To Go gluten-free?

[kimann79]

I had a celiac panel done (second one in the last few years) and I wasn't surprised the results came back negative.

CELIAC DISEASE COMPREHENSIVE PANEL

TISSUE TRANSGLUTAMINASE <3 U/mL

ANTIBODY, IGA Value Explanation of Test Results

< 5 Negative

5 - 8 Equivocal

> 8 Positive

IMMUNOGLOBULIN A-282

I am still considering going gluten free for a while and seeing how I feel. I hate feeling like a hypochondriac though and the thought of dealing with my family rolling their eyes or questioning my decision is enough to almost make me reconsider...

I mainly want a definitive answer on whether or not I have a problem with gluten and from what I understand, the blood tests I had taken can't really give me that.

A little bit of my history:

At birth- put on a special formula because I couldn't digest anything (suffered from bouts of constipation/diarrhea

At four- developed OCD (severe anxiety)

At four- developed chronic canker sores (are really bad when I consume anything with caffeine for some reason...)

At twelve- diagnosed with MVP and heart murmur.

At fifteen- diagnosed with Graves disease (had RAI)

At twenty- suffered a devastating miscarriage

At twenty-one- diagnosed with severe anemia (I've been anemic or had severely low ferritin levels ever since- I'm now thirty)

At twenty-two- diagnosed with IBS

At twenty-five-diagnosed with CFS

At twenty-nine-diagnosed with adrenal fatigue

Just recently- was encouraged by my doctor to take magnesium for magnesium deficiency

I didn't have blood taken for that (I don't have insurance and I've maxed out my credit card trying to deal with the thyroid and adrenal issues) but I have symptoms that point to magnesium, B-12 and D deficiency.

Anyway, I guess I just need to hear somebody tell me I'm not crazy to consider going gluten free. Most of my family will not accept I have a problem unless it has been diagnosed by a doctor but I don't know that I care anymore. My husband supports me in this and if I do find I have a problem I will eliminate gluten from the diets of my two daughters for a trial as well. My poor little three year old has SEVERE constipation and has since she was an infant. My five year old has suffered from eczema and is now breaking out with canker sores (poor baby, they hurt so bad.)

I plan on starting this tomorrow...how long would I have to be gluten free before doing a challenge and will I know right away if it is the gluten that is affecting me? I was considering introducing spelt or barley first and if I don't have a problem introducing wheat. If I have a problem with the wheat and not the barley than I would assume I have a wheat intolerance. If I have a problem with the spelt or barley it would obviously be gluten.

What sort of reaction should I be looking for?

I've had mild digestive problems since I was a child. The severity comes in waves. It will be really bad for a while, but than be tolerable. It's just ever present so I'm not sure how it will feel to not have it. Will I def. know when I introduce gluten back into my diet that it is what is/isn't causing my health problems?

Thanks for the help!

[torimuse]

I know I'm really new to this forum, but the one thing that keeps repeating itself over and over again is: If it makes you sick, don't eat it.

Screw what the doctors say, you want to feel well again. If you want to go gluten free, by all means do it. If it makes you and your daughters feel better, then what's the problem? Gluten Intolerance, Celiac's Disease, does it really matter exactly how it makes you sick if the same "treatment" will make it better? I'm seriously considering forgoing a diagnosis myself because I'm sick of being sick.

As for your family, they can learn to deal with it. People will always learn to cope. Hell, I've found that there's a new gluten-free Fad Diet out there for people to lose weight and feel better. They should just be happy that you've found a way to feel better, and that it works (hopefully) for you and your girls.

Standard for allergy testing is to give it one month to get it out of your system, however, I've seen people on this forum who feel better within days or weeks of going gluten-free.

[RoseTapper]

According to an expert who spoke at the Gluten Intolerance Group's Annual Conference last month, 7 out of 10 celiacs will test negative for celiac unless there is TOTAL villous atrophy. The tests for celiac aren't perfect, and, in my opinion, you're a poster child for this disease. Pay no attention to the doctors or your family on this matter--YOU know how gluten affects you. Hold your head up high and commit to never eating gluten again. As long as you feel healthy, who cares what others think?

[1erCru]

Don't even bother with a diagnosis. You'll only going to know if gluten is a problem by going gluten free. All of the diagnosis crap is a waste of time and suffering.

Gluten sensitivity is real as well. I have it and it ruined the last seven years of my life. I tested negative for celiac based on a small bowel biopsy. I did have elevated IGG anti gliadin

antibodies. The doctor stated I had depression. Over a period of seven years I developed neuropathy all over my body, hydradentis supprativa, fat malabsorption, severe fatigue, depression, OCD, etc etc. There is a possibility that I developed celiac after the biopsy but once your health is in extreme jeopardy you simply stop caring about a diagnosis.

It is extremely dangerous for these doctors to tell patients with " IBS " that they do not have a problem with gluten. I'd go so far as to say anyone with IBS should go gluten free for 3 to 6 months and see how they feel. I'd wager an enormous number of people would feel better. It amazes me these doctors don't use gluten restriction as a front line treatment. These labs are a waste of time. Swallow your pride and just eliminate gluten. If you don't feel better after 6 months then it's something else.

As a side not I deteriorated after eliminating gluten. I began to feel the results after about 4-5 months.

[kimann79]

You're right. I don't know why, when my husband and closest friends are encouraging me to make the best choice for my health, I care what anyone else thinks.

I bought a load of gluten free flours at the store and I'm getting together with a friend who has chronic severe anemia this week to test some recipes. It'll be much easier since we have decided to do this together.

Thanks for the encouragement. I will give it a go and see what happens.

[Skylark]

You are NOT a hypochondriac! You have a whole list of problems that are associated with gluten intolerance. Try the diet, see if it works. Also, you might want to pick up some B-complex and calcium & D along with the magnesium. Low B vitamins can really make you feel rotten.

Like you, I had a lifetime of stomach aches and digestive problems. The stomach aches stopped after two weeks of a lamb/rice/pears elimination diet. I got a stomach-ache from trying wheat so it was pretty easy to tell the wheat was a problem. It took me a while to figure out the rye and barley and that it was actually all gluten because I wasn't reacting as strongly to them. I would encourage you to cut out all gluten at first.

By the way, I haven't had any canker sores since going gluten free except when I get into gluten by mistake. It's such an odd feeling to bite the inside of my mouth and have it heal normally. The exact same thing has happened to my mom since she decided to go off gluten.

[GFinDC]

If you can stay completely gluten free for 2 or 3 months, and then do a test by eating gluten for a week, you will most likely know your answer. This kind of challenge test is good for people with digestion symptoms, but may not help for people who don't have digestion symptoms. There are some people who have no digestion symptoms at all, but still have celiac. It sounds like you have enough symptoms to tell the affects.

I suggest you avoid the pre-made gluten-free foods for your test, and stick with whole foods made from scratch. That way you won't run into and be confused by possible symptoms from other food intolerances. Lots of gluten-free manufactured products have soy, potato, or dairy, which are all possible problem foods for us.

[kimann79]

I cook pretty much everything from scratch anyway and I wouldn't touch soy (unless it is fermented) with a ten foot pole. I had dairy problems until I began drinking raw milk and haven't had any problems with that.

I am taking iron and magnesium. I need to look into the other vitamins. Mine concern was that I wouldn't absorb those vitamins any better than vitamins in whole foods. It wouldn't be a waste of money to take them?

[Skylark]

Well, you're assuming malabsorption, which may not be the case with your negative blood tests. It's not clear how gluten makes people who are not celiac sick. To be honest, waiting a month or two to see if your stomach settles won't change much either way. You could grab a sublingual B12 supplement to start on now. A lot of people really like them.

[kimann79]

Well, you're assuming malabsorption, which may not be the case with your negative blood tests. It's not clear how gluten makes people who are not celiac sick. To be honest, waiting a month or two to see if your stomach settles won't change much either way. You could grab a sublingual B12 supplement to start on now. A lot of people really like them.

Can gluten intolerance create the same severity of health problems as celiac? Would it be able to cause all those issues I have? If so, do I have to be as strict with gluten intolerance (assuming that is an issue for me- maybe it could just be wheat?) as someone with celiac? How would I know the difference? What exactly is the difference between celiac and gluten intolerance? I know celiac is when the villi are flattened and nothing can be absorbed...is gluten intolerance a precursor to celiac or a completely different issue?

[GFinDC]

Gee, a whole series of excellent questions there. Gluten intolerance vs celiac? Well, some people don't test positive on the blood antibodies, or show villous atrophy, but are still sick when thwy eat gluten. One term for that is NCGI no-celiac gluten intolerance.

Some people don't have much in the way of digestion symptoms, but have other symptoms like sore joints, neurolgical disorders, skin conditions, etc.. So what do you call that when the intestines are fine but the rest of the body is damaged? NCGI.

Does NCGI lead to celiac? Real good question, and the answer is unknown. Sure seems possible to me though.

[kimann79]

Would a person with NCGI have to be as vigilant as a celiac in regards to cross-contamination or is eliminating gluten containing foods enough?

[Skylark]

There is no answer to your excellent questions. Thing is, the NCGI symptoms are similar to celiac sprue (I'll use that term for villous damage), with delayed, non-allergy symptoms after eating gluten, GI trouble, fatigue, mild nutrient deficiencies suggestive of malabsorption, and often neurological signs like depression or neuropathy, and hypothyroidism. Sometimes people with NCGI end up with positive blood tests later on, and sometimes they have more symptoms than people who have celiac sprue and only got checked because a relative had it.

With all the similarities, some of the celiac researchers are saying celiac sprue is actually a subset of the genetic gluten intolerance spectrum of diseases. That suggests that eating gluten if you're sensitive to it is unwise, both because of a small risk of developing celiac, and because of the risk of developing other autoimmune problems. Also, even mild malabsorption really isn't good for you as it can lead to B12 deficiencies and osteopenia.

In your case, with Graves' and RAI, your body is already primed for autoimmunity. You would want to take that into account if the gluten-free diet works and you have to make a decision about wheat.

[kimann79]

Thanks so much for the replies and clarifying about the differences. I went gluten free Saturday. I've had chronic stomach pain for so many years that I've grown accustomed to it and it has become normal to always have a stomach ache. I don't have the severity of stomach problems that some with gluten intolerance do, but it is always there...annoying me. It would be nice to not have that.

[Skylark]

Good luck! Let us know if gluten-free helps.