Gluten Free 9 Months Still Sick

[jesimae]

I'm starting to think I have something in addition to celiac. I am steadily losing weight. Went from a size 10 at diagnosis to a 2. My hair is falling out, I'm pale, I have no energy, headaches, dizziness, blurred vision, nystagmus, and just look and feel terrible!

Any ideas? Anyone else experience this? Not really having any GI symptoms...

[rosetapper23]

Could it be vitamin and mineral deficiencies as a result of your celiac? It can take some time before your intestinal lining heals. Have you been tested for deficiencies?? I'm worried for your health....

[domesticactivist]

What are you eating and how is it prepared? What testing have you already undergone?

[dilettantesteph]

Could you be a super sensitive celiac? Try eliminating processed foods and eat only meat and produce.

[jesimae]

At home I eat meat and veggies. I don't appear to have any probs with milk, so I eat milk and cheese. We have a totally gluten free deli/bakery down town, so I get a lot of stuff from there.

My husband, however, insists that I eat out with him once or twice a week and that gets tricky. I try to steer him to places with a gluten free menu, but that's not always possible. Even then I still don't have my typical "celiac" symptoms.

A lot of my symptoms stem from reflux. When I do get sick it usually has to do with volume. I cannot eat until I am satisfied because it will come back up, no matter what it is. I'm taking 80 mg of prilosec twice a day and still have to be careful.

I'm wondering if, since I have had so much damage to my GI tract, my probs are absorption related. Like anemia or a deficiency of some sort? Vitamins make me violently ill, even those that I know are gluten free, so I'm trying to get everything I need from my food, with damaged intestines.

What do u think?

[Skylark]

I'm starting to think I have something in addition to celiac. I am steadily losing weight. Went from a size 10 at diagnosis to a 2. My hair is falling out, I'm pale, I have no energy, headaches, dizziness, blurred vision, nystagmus, and just look and feel terrible!

Any ideas? Anyone else experience this? Not really having any GI symptoms...

It may just be celiac, but those can be symptoms of serious illnesses. Diabetes among others. You really need to make a list of everything (so you don't forget stuff) and get to a doctor so you can be sure nothing else is going on.

[pricklypear1971]

You need to stop eating out at the questionable places AND get back to see a doctor.

Just because you font have an immediate and obvious reaction at the questionable places doesn't mean it isn't getting to you.

Give it a break, at least for a few weeks, and see if it helps. Also, are you taking digestive enzymes with food? That will help break it down so you can absorb it, and nutrients. Also take a probiotic with your food. Your esophagus is probably very damaged and you have to get it healed (regardless of underlying problem). Try biofeedback/ visualization. I tried all the meds and none worked. Visualization did. Mind over body, baby.

I've heard about people who have multiple food allergies that are very hard to diagnose, you may try something like the specific carbohydrate diet and see if it helps.

[pricklypear1971]

And reflux IS a GI symptom.

I understand sensitive stomach issues. You may need IV vitamins/minerals for a while.

Seriously.

[jesimae]

Thanks guys. I'm in the waiting room now. With my list.

[jesimae]

Got a Rx for prednisone. Forgot to mention the rash on my face. I have tested positive for lupus twice in the past but saw a rheumatologist that said I don't have it.

Today he drew a cbc, bmp, tsh, b12, and some type of screen for porphyria, a genetic autoimmune skin condition that is affected by sunlight.

He thinks all of my symptoms are caused by whatever systemic illness I have. Says I just don't fit into any one category. The only thing we know that I have, without a doubt is celiac.

Whatever else I have, I hope it gets better.

[domesticactivist]

I'm so glad you are getting checked out. I also want to put it out there that there are diets aimed at healing the gut rather than jar stopping the damage. Our family does the GAPS diet which is based on the SCD diet. I agree with the others that you need to eliminate the potential cross contamination issues. We totally stopped eating out and created a gluten free home while getting thing under control and it made a huge difference.

[pricklypear1971]

Be VERY careful. Prednisone almost put me in the hospital. How is that supposed to help, if you don't mind me asking?

If you feel odd in any way (read the long list of side effects on webmd) CALL THE DOCTOR IMMEDIATELY AND DO NOT LET THEM PUT YOU OFF!!!!

With a celiac/systemic issue you are at greater risk on corticosteroids.

[pricklypear1971]

Also, of you have a rash THE FIRST THING YOU SHOULD DO IN ADDITION TO gluten-free IS REDUCE IODINE IN YOUR DIET. You may have DH!!!!

Yes, I'm screaming because I do not want you to go through the same hell I went through on corticosteroids. It can wreak havoc on your adrenals, and they are probably already having issues from celiac.

[jesimae]

Interesting u should bring this up. One doc I was seeing when I first got sick, swore I had Addison's. I had low blood pressure, low aldosterone, craving salt, low sodium and potassium, fainting spells, low adh, dry skin, brittle hair, other things. However when my tests and hillside from the GI doc came back showing celiac and barretts esophagus, all those symptoms were attributed to that.

She actually gave me a shot of adrenaline to check function of my adrenals and I went to sleep. She said she'd never seen that before.

Steroids are the only thing that helps me though. I don't know what to think.

[jesimae]

Hillside is supposed to be biopsies. Stupid smart phone! Lol

[Skylark]

Lupus, ugh! It's great that your Dr. is taking you seriously and working with you. I hope the prednisone helps.

You should look up Addison's and see how well the symptoms fit. It can be autoimmune and can appear with celiac. If steroids really help that shores up the idea of Addison's, doesn't it?

[pricklypear1971]

What do the steroids help?

Have you tried a low-iodine diet (search low iodine thyca diet)?

Prednisone got rid of my DH; however it also wrecked my body - brain, adrenals, nerves, eyes, etc. I was hypoglycemic for a few months AND STONED. DH Also came roaring back after I got off of it.

And I'm pretty sure my rash is DH. I took away gluten then (after getting off corticosteroid cream) iodine and it since I took iodine away it fades every day, noticeably.

There is another poster here that uses steroids to get over glutening.

[jesimae]

Steroids help with the joint pain and the rash. I have gotten this rash periodically since I had mono in high school. Doc just started treating with steroids last year.

[pricklypear1971]

I'd get diligent about avoiding gluten and also go low-iodine for a while. Both are classic celiac/DH symptoms.

I'd also find some way to get vitamins in you - super-coated, IV, whatever. Sounds like it couldn't hurt.

I'd also try the SCD Diet. May help your reflux calm down.

[beebs]

Got a Rx for prednisone. Forgot to mention the rash on my face. I have tested positive for lupus twice in the past but saw a rheumatologist that said I don't have it.

Today he drew a cbc, bmp, tsh, b12, and some type of screen for porphyria, a genetic autoimmune skin condition that is affected by sunlight.

He thinks all of my symptoms are caused by whatever systemic illness I have. Says I just don't fit into any one category. The only thing we know that I have, without a doubt is celiac.

Whatever else I have, I hope it gets better.

The fact that you have tested positive twice for lupus is pretty suspicious of the fact that you may have it. I mean -your hair is falling out, you feel rotten all the time, you are losing weight. Celiac is an autoimmune disease and you are therefore more likely to have another or more of them there seems to be correlation between connective tissue diseases (ie lupus, sjogrens, RA et) and celiac. Why was your rheumy so sure you don't have lupus.

Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.

The “Eleven Criteria”

Malar rash: butterfly-shaped rash across cheeks and nose

Discoid (skin) rash: raised red patches

Photosensitivity: skin rash as result of unusual reaction to sunlight

Mouth or nose ulcers: usually painless

Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.

Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)

Neurologic disorder: seizures and/or psychosis

Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine

Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count

Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin

Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

Also - make sure you check your meds - I have just found out that nexium cannot be guaranteed gluten free

Reflux is one of my obvious symptoms - pretty much resolved after going gluten free after me being medicated for years before hand.

[AVR1962]

At home I eat meat and veggies. I don't appear to have any probs with milk, so I eat milk and cheese. We have a totally gluten free deli/bakery down town, so I get a lot of stuff from there.

My husband, however, insists that I eat out with him once or twice a week and that gets tricky. I try to steer him to places with a gluten free menu, but that's not always possible. Even then I still don't have my typical "celiac" symptoms.

A lot of my symptoms stem from reflux. When I do get sick it usually has to do with volume. I cannot eat until I am satisfied because it will come back up, no matter what it is. I'm taking 80 mg of prilosec twice a day and still have to be careful.

I'm wondering if, since I have had so much damage to my GI tract, my probs are absorption related. Like anemia or a deficiency of some sort? Vitamins make me violently ill, even those that I know are gluten free, so I'm trying to get everything I need from my food, with damaged intestines.

What do u think?

I did not read all the replies here but this definately sounds like malabsorbtion. I too did not have the typical symptoms but I was dizzy (every day), vertigo, blurred vision, depth perception was off, I could not think, my speech was messed up, I had hair loss, cramping & twitches in my muscles. Docs thought I may have had a stroke.

I got ahold of one of my blood tests and sure enough....doc had not told me but I was suffering from malabsortion. I looked up every Low marking and found the answers on the Internet. I can tell you what I have found that has helped me and perhaps it will be a benefit to you as well:

Vit D- to help absorb calcium, irritability and dizziness or vertigo, crawling sensation on skin, bladder issues, joint pain, poor concentration, memory

B12- for tingling in hands or feet, anemia, nerve damage, buzzing in ears, neuropathy issues

Magnesium- confusion and poor memory, fatigue, disturbed sleep, irritability, general lack of interest, muscle twitching, muscle contraction

Zinc- supports immune system, hair loss, taste loss

Potassium- regulate nerve transmissions and muscle contractions, restless legs, charlie horses

Iron- for anemia

Silicon drops- helps maintain bone density and strength by facilitating the deposit of calcium and other minerals into bone tissue

L Carnitine- burning, tingling, stiffness in toes, feet and hands. Pins and needles feeling in feet and hands

Thiamine (B1)- hot/burning feet

I also take a prenatal vitamin on top of all of this. Vitamin was my big deficiency and I take 1000 IUs 3 times a day on top of my multi vitamin. Vitamin B12 will not stay in the system, only a tiny % of it will actual absorb so I also tkae it 3 times a day. I was having lots of trouble with spams and muscle craps so I take magnesium and potassium 2 times a day.

[Roda]

I would concentrate on eating whole unprocessed foods and not eat at restaurants until you get this sorted out. I would also avoid eating things from the bakery. I ate at a bakery in Downtown Disney last Jan. that was strictly gluten free. I reacted horribly because they used gluten free flours/meals from Bob's Red Mill of which I can not tolerate. I react to all of BRM gluten free items due to the contamination from the gluten free oats. So that leads me to ask if you are eating oats?

[jesimae]

No oats. No brm. Had a come to Jesus meeting with my husband. I think he will be more understanding and supportive now.

The past 2 days my blood pressure's been low, and I'm urinating all the time. I stopped taking the steroids. I had those symptoms before when the doc thought I had Addison's. Hmm...

Just waiting on test results...

[pricklypear1971]

Be careful coming off prednisone. Do it slowly, it can send your adrenals in a spin. I had to watch my blood sugar VERY carefully. Eat regular meals of complex carbs.

I agree, you need vitamins. Of ask about IV vitamins for a while next appt.

[lolololo]

Hillside is supposed to be biopsies. Stupid smart phone! Lol

Good luck! I hope it's nothing serious.