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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 think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
    • Try to stick to a whole foods diet.  Things like unseasoned stew, soup, etc.  Things easy-to digest, preferably not processed by a anyone except you.  Too often new celiacs start using gluten-free foods (cookies, bread, crackers).  Your body is not used to these grains and they often contain lots of junk.  For example, I react to Xantham gum.  It does not bother my gluten-free hubby, but it gets me every single time!   Did you read our Newbie 101 thread under "Coping"?   It contains lots of valuable tips.  Make sure those meds are gluten free.  Supplements too.   I hope you feel better soon!    
    • Here are the actual tests.   http://www.cureceliacdisease.org/screening/ Insist on the complete panel.  Let them know (your doctor) that your father had celiac disease.   Document in writing!  If you have celiac disease, your life can be improved.  All the things I attributed to aging were actually related to celiac disease.  It is never too late to feel well!  I am in my 50's but my Aunt iis 81.  We celebrate a Gluten free Thanksgiving every year!   Oh, my kid does not have celiac disease, but she is tested every few years even though she is symptom free!  There are silent celiacs.  My symptom?  Anemia.  No tummy issues.   Please advocate for your health.  Keep all records.  Doctors can not ignore written facts and requests.    
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