Celiac? Help!

[Don't Blink]

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!

[Marilyn R]

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!

[1desperateladysaved]

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

[squirmingitch]

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

[Ollie's Mom]

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?

[Don't Blink]

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.