What Do I Do Now?

[SpiralArrow]

Hello again everyone, I've been waiting close to three weeks for the results of my antibody test and I finally got them yesterday. They're negative. All I was told over the phone by a different lady is that I'm borderline anemic. I have been eating as gluten free as possible for the past week because my results were taking so long, and to be honest, I've still been having stomach problems. (I suffer from constipation, white bits in stools, pale stools, and mucus which usually seems to lessen if I stop eating glutenly products.) But I'm also currently suffering from my dreaded PMS week which always causes me severe constipation, so I have no idea what to blame!

The only strange improvements I've seen from trying gluten-free this week is my insomnia disappeared after a few days, my brain fog had cleared up dramatically, I'm not as exhausted during the day and my skin texture looks healthier? At this time during the month I usually expect to suffer from bilateral cysts along my jaw line, but after not eating gluten for a a day or so my skin is, well.. it's CLEAR. And for the most part, my stomach stopped bloating up to the size of a heavily pregnant lady on my gluten free meals. Just a bit sore and worn out I guess. The only times it happened was during times that I think my food was prepared badly. For example, I had some simple soup with a rice bread roll on one day which was completely fine, but I had the same thing a few days later and my step dad prepared it for me. I walked into the kitchen and he was handling the bread roll on a chopping board that was covered with crumbs from a cream pie that he was eating and holding with his other hand!

Though I have a hard time believing that I'm that sensitive to gluten if my results are negative. I feel quite discouraged. So discouraged that I gave in last night and had some Dominos Pizza with my boyfriend. And surprise! I bloated up like a balloon and had pains in my abdomen, shortness of breath, insomnia all night and now I've woken up with barely any sleep and I still have shortness of breath.

I have no idea what I'm supposed to do now, or what to discuss with my doctor. What should my next steps be? Is there any point in requesting my results and bringing them here for one of you lovely people to interpret? Should I be requesting any other type of test? Thank you in advance.

[lynnelise]

It is not at all uncommon for people to be intolerant to gluten yet the tests to be negative. Tell your doctor that you've trialed the diet and have seen improvement. Sometimes doctors will give you a diagnoses based on that alone.

[mushroom]

Yes, you certainly should get a copy of your test results from your doctor, something you should routinely do for all tests. Sometimes they can be quite revealing. For example, say a score of 20 is positive, and your score was 19 - what does that tell you?? We would be glad to look at them and comment - be sure to tell us the ranges the lab uses.

As for what you should do now, I believe your post contains the answer. Improvements in insomnia, brain fog, fatigue, skin texture, bloating, while off gluten... and then a very bad reaction to a slice of pizza And a classic cross-contamination of your bread roll by your step-dad!

You are concerned you are still constipated, but it HAS only been a week and you say you are normally constipated this time of month anyway. Healing takes months, not days or weeks!

The sad truth is that besides celiac disease people, there are also those of us who will never pass their celiac test. While some of us may score high enough to get a D, we will never pass it. That does not mean that we are dumb, it just means that the test is wrong. It only tests for one kind of gluten intolerance, celiac disease, and not the kind we have. It is a bit like studying the french language for a year and then being given a test in Swahili Researchers and the more enlightened medical professionals are now recognizing that there is such a thing as non-celiac gluten intolerance and that may well be what you have, although sometimes those with the symptoms who can't pass the test today will be able to pass the test a couple of years from now when they have done more studying (read more damage)

You have tested positive for borderline anemia, a common outcome with gluten intolerance because your small intestine is not absorbing the proper nutrients from your food. Did they also test your other nutrient levels (D, B12 especially) and your thyroid function. These are the major deficiencies caused by gluten.

So I believe your choices are either to continue studying (eating gluten) until you are able to pass the test (have done sufficient damage), or consider that you don't need to pass their stupid test, that you know enough to know that gluten is bad for you and decide that you are not going to eat it.

Another option, depending on your insurance and your doctor, is to ask for the other part of the celiac testing usually done after a positive blood test, and that is the upper endoscopy with biopsy looking for damage in the small intestine. But you would have to resume eating gluten immediately if you wanted to follow this course, because although healing takes a long time, it begins immediately and lack of gluten can affect the test results because of that preliminary healing.

[SpiralArrow]

Thanks again for the responses!

I just got back from my GP and I did get my results, but I'm frustrated. It just says Anti-tissue Transglutaminase NEG. Is that it? I thought there were more parts to the test than one straight result. Maybe I should ask to have the dna test? Unfortunately I don't know my father's side of the family so I have no idea what health issues I could have inherrited, and my mother and grandparents passed away when I was a child, so I can't ask them. All I know is my mother once requested a food allergy test, so something must have been bothering her. Then she developed multiple sclerosis in her early 40s.

I also had my kidneys checked which were normal, my thyroid is normal, but my blood count and liver have some small oddities. I know this isn't really the place to talk about these kinds of results (sorry!) but on my full blood count my Haematocrit is marked as high and so is my Mean Corpuscular Volume. My doctor brushed past these and said she doesn't think there is a need to worry because they're only slightly high, but I just did a quick google search and apart from serious things like liver disease, they're linked to either anemia, vitamin deficiencies or malnutrition, thyroid problems and celiac disease. But as for other deficiencies, nothing else was tested for.

The real reason I'm frustrated is she didn't seem to care in the slightest when I explained the improvements that I had seen when trying not to eat gluten. I was prepared for a possible negative test, but not for my doctor to be so clueless about it. I asked her honestly if anything else could be causing these problems in her opinion, and she said "I've been thinking about everything it could be, and I just don't know." and then asked me what I want to do... I don't know what to do, that's why I booked an appointment! So she's sending me to a gastronomical expert, but I have no idea when this will happen.

So yes as you said, now I'm facing that dilemma, to eat gluten or not to eat? And I honestly don't know what to do. Like most people a diagnosis would make life a lot easier but right now I can't even live life properly. I'll have to think about it for a few days. It also depends on how long it will take to see this specialist. I might be willing to suffer for a little while longer, but months? I don't think I can do that.

EDIT: I completely forgot to mention I used to go through random phases of having 3 or 4 mouth ulcers at a time and never knew why. I figured my dentil hygiene was pretty good. After the meal last night I can feel two ulcers forming and my gums are a bit achey... Mouth ulcers are linked to celiac right? Maybe I'm just grasping at straws now!

[mushroom]

There are several tests that constitute the celiac "panel" but many doctors choose to run only the tTG because they have been taught that that one is the most sensitive for celiac (not necessarily true but that's what they believe). As you are finding out, most doctors are still pretty clueless about celiac. You may be able to convince a gastroenterologist to run the full panel for you and do the endo with biopsies if you accept the referral.

My doctor used to brush aside my "slightly high" MCV, until I made her check other nutrients and my folate was way out of whack along with B12 and D, and whoops, she suddenly decided I had pernicious anemia. And yes, ulcers in the mouth are definitely associated with celiac.

If I were you I would go see the GI and hope that I got a good one

[SpiralArrow]

My doctor used to brush aside my "slightly high" MCV, until I made her check other nutrients and my folate was way out of whack along with B12 and D, and whoops, she suddenly decided I had pernicious anemia.

That's good to know. My specialist is booked but the earliest appointment that was available is September! Now I face going gluten free and ruining the testing, or glutening myself and feeling horrible for nearly two months. I know I should be eating gluten right now, but I carried on trying gluten free for the past week because I keep feeling like I need "evidence of glutening" and more proof that gluten free is helping me. Silly and counter productive I know, but after yesterday I don't care if I keep getting misdiagnosed, gluten definitely upsets me.

I had avoided CC for a few days and was feeling better, then had a cup of cocoa yesterday morning that I thought was gluten free. Wrong! Half way through drinking it I got vertigo and light-headedness, my abdomen did the swelling routine, brain fog set in like a bad storm and then I developed stabbing headaches. It was a bit frightening because it was the first time I've really suffered from a headache that bad from glutening. I didn't start feeling well enough to get up until the late afternoon.

And when I did get up, all I could find is the brand of cocoa I had used wasn't on Nestle's "Gluten-free" list. It used to be (I stupidly looked at a list from 2004 at first and then got frustrated. lol) but on the recently updated list it has been removed.

So my plan is to try and eat gluten free for one more week, then go back onto gluten until I see the specialist. I'm hoping that should be enough, and plus during my gluten-free trials, I've glutened myself accidentally a few times anyway.

Now if only I could stop obsessing that my problems are caused by something worse...

[nora-n]

yes, many celiacs have had mouth ulcers etc.

Low b-12 is also common with celiac.

In b-12 deficiency the red blood cells typically are large.

[sreese68]

I had negative bloodwork, but I most definitely have celiac. My doctor diagnosed me based on response to diet, low vitamin D levels, and symptoms. I strongly recommend writing down everything you eat between now and your appointment as well as every reaction you have (lack of symptoms as well as symptoms). Summarize it for your doctor and show it to him/her. I think having it down in black and white will get your farther than verbally describing what's going on. AND it will help you see if other foods are bothering you. (I recently had to cut out all dairy since it makes my constipation worse.)

To see the constipation get better, you have to give it more time. One week isn't enough. And be VERY careful about CC. You should probably be the only one preparing your food for awhile. After you've been gluten-free for awhile, if the constipation doesn't improve, then start looking at other foods as causes since many people with celiac have other food intolerances at first. For instance, brown rice, dairy, and foods with lots of fructose all make me constipated.

Good luck!