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Celiac? Help!
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6 posts in this topic

I'm wondering if someone here can point me in the right direction. I'm making an appointment with my doctor tomorrow, but I want to make sure that I ask the right questions and request the right tests.

I am a 28 year old woman. I have always had digestive difficulties that resemble IBS including lactose intolerance. I am always sick to my stomach in the morning and am often sick to my stomach throughout the day (bloating, flatulence, loose stools sorry tmi). I am very short and had late-onset puberty. I have asthma and a long list of environmental allergies. I have anxiety/depression and Asperger Syndrome. I tend to be anemic.

After my second child's birth I began to experience lethargy and weight gain. I became infertile and was diagnosed with PCOS (even though I have no actual cysts on my ovaries) and probable endometriosis because of the intense pain I had in my abdomen (despite the fact that this pain was in the bowel). I began to have intense pain before BMs, but because it was worse during periods they suspected endo. In passing the doctor recommended I try a gluten-free diet as I might be sensitive to it. She didn't do any testing for it so I'm not sure why she said that. I did not go on a gluten-free diet at that time.

Over the next few years after this I began to develop neuropathy pain and tingling. My lactose intolerance and asthma became far worse as well.

A few months back my husband and I did an Atkins diet together. I've never felt better in my life. I jumped out of bed in the morning with more energy than I'd ever had. It was nothing short of miraculous. My lactose intolerance disappeared during this time. It reappeared with a vengeance after we quit the diet. My energy levels are very low again.

Over the past month I have developed a horrible rash of red bumps on my scalp. They ooze a little and are painful and a bit itchy.

Two weeks ago I contracted a respiratory virus. It effected my family members minimally, but I was laid up in bed for about 2 weeks with horrible diarrhea. I was existing on ginger ale, crackers, and pasta. I am on an antidepressant that is prescribed off-label for IBS, so I should NOT be having diarrhea. Neuropathy became worse as well.

I have been on a gluten free diet for two days and have not had diarrhea in 24 hours. I have to think that it is not a coincidence. The rash on my head is still awful, though. I'm afraid my hair is going to start to fall out.

Any thoughts? What should I tell my doctor?

Thanks!

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I'm wondering if someone here can point me in the right direction. I'm making an appointment with my doctor tomorrow, but I want to make sure that I ask the right questions and request the right tests.

I am a 28 year old woman. I have always had digestive difficulties that resemble IBS including lactose intolerance. I am always sick to my stomach in the morning and am often sick to my stomach throughout the day (bloating, flatulence, loose stools sorry tmi). I am very short and had late-onset puberty. I have asthma and a long list of environmental allergies. I have anxiety/depression and Asperger Syndrome. I tend to be anemic.

After my second child's birth I began to experience lethargy and weight gain. I became infertile and was diagnosed with PCOS (even though I have no actual cysts on my ovaries) and probable endometriosis because of the intense pain I had in my abdomen (despite the fact that this pain was in the bowel). I began to have intense pain before BMs, but because it was worse during periods they suspected endo. In passing the doctor recommended I try a gluten-free diet as I might be sensitive to it. She didn't do any testing for it so I'm not sure why she said that. I did not go on a gluten-free diet at that time.

Over the next few years after this I began to develop neuropathy pain and tingling. My lactose intolerance and asthma became far worse as well.

A few months back my husband and I did an Atkins diet together. I've never felt better in my life. I jumped out of bed in the morning with more energy than I'd ever had. It was nothing short of miraculous. My lactose intolerance disappeared during this time. It reappeared with a vengeance after we quit the diet. My energy levels are very low again.

Over the past month I have developed a horrible rash of red bumps on my scalp. They ooze a little and are painful and a bit itchy.

Two weeks ago I contracted a respiratory virus. It effected my family members minimally, but I was laid up in bed for about 2 weeks with horrible diarrhea. I was existing on ginger ale, crackers, and pasta. I am on an antidepressant that is prescribed off-label for IBS, so I should NOT be having diarrhea. Neuropathy became worse as well.

I have been on a gluten free diet for two days and have not had diarrhea in 24 hours. I have to think that it is not a coincidence. The rash on my head is still awful, though. I'm afraid my hair is going to start to fall out.

Any thoughts? What should I tell my doctor?

Thanks!

Aak! Sounds like you are reliving my life, but you're younger. Tell your dr. you want a celiac panel blood test. If he doesn't know what that is, tell him to write it in, any lab will know.

Good luck, wish you good health!

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Hi Don't Blink,

I am sorry you have been suffering like this. I hope you will find a definitive answer to your health problems. I would tell your doctor everything above. I would also ask them to do a complete Celiac profile. Caution do find the whole list on the forum. I will try if I remember. The tests really should be done before you go gluten free to be accurate. Otherwise you could get a false negative.

You already have had a positive reaction to the diet. Several of the symptoms you mentioned are discussed on the forum. The rash could be anything, but could also be a result of the diet. For me, when starting a natural remedy, such as diet, I count any reaction as good. Sometimes one gets a little worse before they get better.

Diana

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Boy, you sound like a prime candidate! Okay, first off this is really, really important.

You must not stop eating a normal gluten filled diet until ALL testing is finished including an endoscopy/biopsy.

If you do, you will run the risk of false negative results.

Here is the current FULL celiac blood panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

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A fellow aspie!

The advice you received above is excellent (as always). And remember, keep eating gluten until all testing is done.

Then regardless if the results, if I were you, I'd go gluten-free. I feel much less autistic when I am gluten-free (and dairy free helps even more). If I get glutened, I can feel myself withdrawing and my sensory issues (touch, sound) take on a life if their own. This goes along with my D and rash (which I suspect is DH).

I'm curious - did you feel "less autistic" when you were on the Atkins diet? In addition to finding relief with your other symptoms?

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A fellow aspie!

The advice you received above is excellent (as always). And remember, keep eating gluten until all testing is done.

Then regardless if the results, if I were you, I'd go gluten-free. I feel much less autistic when I am gluten-free (and dairy free helps even more). If I get glutened, I can feel myself withdrawing and my sensory issues (touch, sound) take on a life if their own. This goes along with my D and rash (which I suspect is DH).

I'm curious - did you feel "less autistic" when you were on the Atkins diet? In addition to finding relief with your other symptoms?

A fellow aspie!

The advice you received above is excellent (as always). And remember, keep eating gluten until all testing is done.

Then regardless if the results, if I were you, I'd go gluten-free. I feel much less autistic when I am gluten-free (and dairy free helps even more). If I get glutened, I can feel myself withdrawing and my sensory issues (touch, sound) take on a life if their own. This goes along with my D and rash (which I suspect is DH).

I'm curious - did you feel "less autistic" when you were on the Atkins diet? In addition to finding relief with your other symptoms?

I become withdrawn when I feel ill. I am very sensory-defensive, so any extra stimuli on top of the illness seems magnified because I'm already so overwhelmed. So I wouldn't say I felt "less autistic" on Atkins, but my sensory difficulties were not as pronounced. I still had overwhelming urges to read for hours on end, a strong aversion to social situations, the tendency to put a song on repeat for hours, and an inability to pick up on sarcasm, just to name a few of my quirks. ;-) Now that I think about it, my mind was less "foggy." The fog can make it hard for me to focus and complete tasks. Fortunately I'm sort of a compulsive list-maker, which helps a great deal.

Thanks for all replies. I will go back on a gluten diet (UGH). I had been feeling a bit better, but I am not feeling so well today after eating some gluten-free pretzels and cookies. Gassy and running to the bathroom (sorry tmi). I think I'll stick with less processed items.

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    • I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 
    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
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