Need Some Assistance

[Nan2N]

Hi everyone

I've been having a lot of trouble and wondering if I could get some advice. Since going gluten free I have been getting progressively worse. My mind doesn't work at all. My memory is shot...can't remember anything from even hours ago. I can't gain weight and look extremely malnourished.

I seem to react (my brain gets muddled) to just about everything I eat. I think rice was a big culprit so I've cut that out. I only have dairy (butter, etc.) every once in a while but don't know about casein. My doctors keep telling me I don't have malabsorption issues and I've been to the doctors (many drs!) many times and can't get anywhere. Some say "maybe you don't have celiac" and I don't know what to do.

I feel like I'm wasting away and about to collapse all the time and I wasn't like this before I was diagnosed. I was diagnosed because of sudden weight loss and hair loss but had no other symptoms. There were other things going on at the time so those symptoms could have been caused by that. Don't know.

When I went to my doctor pleading for help today, he said maybe you don't have celiac. I told him my blood work said I did. He asked about the biopsies which were negative and he said he read the report from my GI which wasn't definitive of Celiac. He poo-pooed the blood work.

Then he told me to try eating regular and see what I could tolerate. He said my nutrition was more important right now and if I ate gluten it wouldn't hurt me as much as my nutritional status would.

I don't know what to do. I've been strictly gluten free and eating enough that I would think I would be better. After 4 months I'm only getting worse.

I'm getting rechecked for lyme and that doctor was willing to run a blood test for food intolerances. But I have to wait 3 weeks.

Any suggestions? I don't want to sound overly dramatic but I feel like I need to be in the hospital.

Did anyone get worse going gluten free?

Thanks

[elye]

Hi, Nan,

If you had the celiac blood panel run, and it was positive, you are almost certainly celiac. There are commonly false negatives, but almost never false positives. And simply because your lower intestine does not show villi damage, does not mean that you do not have an active intolerance.

Many people are on the gluten-free diet for quite a while before they feel better - - months, certainly. It can be a type of withdrawal, and many people feel worse before they begin to feel better. It took me a while.

It's a good idea to get the blood work for other intolerances, as many of us who are gluten intolerant also have trouble with casein and/or lactose.

Good luck! Keep us posted.

[Nan2N]

But would my mind get worse and worse? I mean it's really scary. I can barely function.

My nutrition should start to get better shouldn't it?

So the blood work couldn't possibly be wrong or mean something else? I would rather be healthy..not trying to deny it but I wonder why so many people would question it.

I can't see how I could get much worse but it's been a downward spiral for the past 4 months.

Why would my doc think I should try eating regularly if it isn't safe? I don't know what to believe any more.

[lizard00]

Did your doctor test you for any vitamin/mineral deficiencies? Vit D deficiencyis linked to many, many things, including trouble concentrating. Many Celiacs are vit D deficient. B12 deficiency makes you lack energy, etc.

As a PP said, if your blood tests came back positive, it's pretty clear that you have Celiac. Have they tested you for anything else? Could be Celiac in conjunction with something else?

[Ursa Major]

Why would my doc think I should try eating regularly if it isn't safe? I don't know what to believe any more.

My answer to that would be, that most doctors are completely ignorant about celiac disease, and also don't have a clue about nutrition.

You may have hypothyroidism and/or adrenal fatigue, or worse, adrenal insufficiency (Addison's disease). Which can both be triggered by celiac disease, by the way.

Ask to be tested for thyroid problems. In fact, ask to be tested for levels of Free T3, Free T4 and TSH for the thyroid, and have cortisol and aldosterone levels checked (for the adrenals). Problems with the thyroid and adrenals can cause all kinds of problems, including gastrointestinal ones, and definitely extremely low energy.

Other things that could cause your low energy are deficiencies in ferritin (iron), vitamin D, magnesium, potassium, vitamin K and B vitamins (especially B12). It would be a good idea to have those levels checked.

If you are being tested for Lyme disease, insist on being tested by Igenix labs, as those are the only ones who test for all the strains, with all the other labs it can easily be missed.

[Nan2N]

Hi and thanks again

I've had EVERYTHING checked. All tests come back fine. My vitamin D is in the low end of normal, my iron was okay but my ferritin was low end of normal. All other vitamins okay.

I've been checked for other autoimmune diseases and they came back negative.

My lyme did go off to IgeneX.....have a wonderful new doctor!

I've been having a "heady" reaction to sugar (or maybe it was the rice) so I had a hydrogen test today which came out weird. Don't know the results yet.

I've read that the ttg test only picks up a large amount of damage.....but I don't show any villi damage.

I really don't know where else to look. And like I said the Dr.'s are no help. What would I have to do to see if there's real damage further down? Maybe I have malabsorption or leaky gut that's wreaking havoc but don't know it.

I've gotten adjusted to being gluten free. Catch myself doing things automaticallly now and I wouldn't want to risk it. But I've got to wonder. I've read some conflicting things about the blood results too....especially without the positive biopsy. It just seems like with the severity of symptoms now, that I would've showed some kind of damage.

I'm really not trying to be in denial. Just being a detective. And I have heard that sometimes the biopsy doesn't always it and that damage can be patchy.

I'm just trying to get some nutrients back and wonder what the heck I can eat!!!

[ive]

Sorry to hear you are not getting better yet.

I see that you eliminated dairy. Did you cut out soy from your diet? If not, please try to cut it out. There are many people on this forum who had to give up soy before they got better. Apparently soy gives me very similar symptoms as gluten, and my symptoms are not strictly GI related. I can not even tolerate soy lecithin in chocolate.

As for villi damage, may be doctors didn't take enough samples of your intestine for biopsy; the damage to your intestine occurs in spots, so they could have easily missed it.

Hope you will get better.

[AndrewNYC]

Order this and eat it without anything else for two weeks. Open Original Shared Link

[ShayFL]

That stuff would kill me. The first ingredient is "corn" and there is A LOT of it in there. Just look at all of the carbs that corn sugar puts in that "amino acid" drink. WoW!! To get my normal calorie load would put me at over 400 carbs a day (all corn sugar). My blood sugar would would.....gosh that drink alone my put me over into diabetes.

I would stick to whole foods.

[Ursa Major]

Nan, the low end of 'normal' for ferritin and vitamin D is in reality being deficient, and you should supplement with both to get to the optimal range. You may feel a ton better for it.

Also, would you mind posting all of your blood test results? They might be very telling. For instance, if your TSH was above 2, you might be hypothyroid after all.

My aldosterone was, when tested a year ago, 73. The so-called 'normal' range is 60 to 780! But the optimal range is from about 500 to 600. 73 is a very long way away from that, and awfully close to 60 (if you get to sixty you may die).

But my doctor here in Canada looked at it, and proclaimed that my levels were fine, and nothing needed to be done.

When I showed that same lab paper to a doctor in Germany last summer, he looked at that number and proclaimed, "Wow, that is dangerously low, something needs to be done immediately!" And promptly prescribed fludrocortisone for me.

My blood pressure had been getting lower and lower before that, to where it would be 85 over 55. Dangerously low. Within two weeks of taking the fludrocortisone my blood pressure went up to 110 over 65. The lower number still not perfect, but much better (anything under 100 over 60 is considered dangerous).

So, it would be good to see your actual numbers, because there might be a problem your doctor doesn't see.