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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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CNV2855

I'm Worried That I May Have Pituitary/adrenal Involvement.

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There's a period of a few weeks after I'm glutened where I have extraordinary fatigue. While I'm glutened, I don't really have this problem... but it's afterwards after the swelling and inflammation dies down where I feel weak and absolutely drained. I think it goes away after a few months but I'm back in this stage right now and I'm worried.

My appetite is a lot lower. I feel weak. I'll get slightly dizzy and feel like passing out. There's a little bit of confusion and I just feel like I've been up for days and days even though I may have woken up four hours prior. I've been losing weight pretty quickly and there's still some diarrhea even though I'm sure I've been gluten-free for the last 2 weeks+. No vomiting or nausea though.

My testosterone was low last time I had it checked, very low... so there is some glandular involvement. I even had an ACTH stim test done on a doctor's orders but the results were screwed up due to the hospital measuring ACTH throughout the day and not cortisol (duuuuurrrrr). Screwed up the wrong word; I think completely worthless is more fitting.

There's also something else very strange that happens, during this period if I'm put in a stressful situation I'll feel like my body is heating up very, very rapidly along with a sudden burst of energy that lasts the rest of the day usually. It's almost like thyroid hormone was pooled up and the stress causes my glands to produce the proper amount to get it out of my blood, it's quite a strange feeling. I don't take any thyroid medication or anything.

I really need to get it checked out I think... but it does seem to go away if I don't screw up and get myself glutened. The fatigue also seems to be worse after eating protein heavy meals. I don't have skin darkening and I'm not dehydrated so it's not primary, it may be a pituitary problem with the low test.

But we all experience fatigue when we're glutened, I just don't know how much is normal. I have some leftover hydrocortisone because I was prescribed it last year and it does seem to help but I've tried to avoid taking it. It does seem to me that I'm thinning down and losing more weight than I'd like.

You are still healing. I found/find it takes longer at first or if you have been glutened a lot like I was earlier this year. I did get better but then experienced being at square one again. Taking things like pancreatic enzymes to take with your heavy protein meals would probably help. I have found that probiotics also help--take them on an empty stomach.

Fibronylitic enzymes can speed the healing process. Of these, Bromelain/papain are cheap and popular. I take nattokinase which is more expensive but is also much more effective and is salicylic acid free. I order mine on line to get a better deal on it. Its very good against scar tissue plus cleans up debris in the venous system (including the heart). Don't take it though if you are a "bleeder" since it does thin the blood.

Marshmallow root capsules are good against inflammation plus are very soothing of the lining of the gut. L-glutamine is also very powerful at soothing and healing the villi and reducing inflammation. I have found it actually gives me extra energy the next day if I take it on an empty stomach before I go to bed at night, or first thing in the morning.

I also seem to need to take co-enzyme B vitamins. Without them I get really tired, since I need them to support my nervous sytem as well as carbohydrate metabolism and a host of other systems. Often those with celiac or severe gluten intolerance have difficulty absorping B vitamins. This is made even more difficult after being glutened. The co-enzyme B's bypass the liver and instead go directly into the blood stream if taken on an empty stomach.

Further, after being glutened especially, I find its important to take various minerals: calcium, mag, zinc and also the liquid trace minerals and silica drops (esp. good for the joints and tendons and also the nerves).

As far as testing hormones goes, I am much more impressed with naturopaths than with AMA docs... I have a friend who is going through similar symptoms to you; he has had much better investigation and treatment by his naturopath since she actually wants to get to the bottom of his condition and cure him rather than cover up the symptoms with various pills. So far she has discovered he has a couple of bacteria that are resistant to antibiotics and have created havoc in his life, including his hormones.

For now, as a result of his various tests, he is taking natural cures against the bacteria as a first step (she suggested grapefruit seed extract and uva ursi--which unfortunately he had difficulty taking due to his sensitive gut, so now he's taking biocidin and olive leaf along with a low starch and no sugar and no fruit diet instead).

She also has him taking various supplements that help balance out his over active adrenals that otherwise make it impossible for him to sleep. His chronic pattern has been that he then gets wiped out the next day--this is now slowly changing for the better, though its interfered a bit now due to bacteria die off. The naturopath will be seeing him again in a month once the bacteria have died down and go on to the next stage of balancing his sluggish thyroid.

Meanwhile he was diagnosed by the AMA as having a low thyroid, originally with Hashimotos--which suposedly is incurable. However now that he has been on a gluten free diet these last 2 years, he no longer has Hashimotos antibodies. His thyroid still is sluggish but it no longer is attacking itself. The auto immune condition stopped!! Its very possible now that his naturopath will be able to turn his situation around so he no longer needs to take thyroid medication or at the very least it finally will start actually helping him--since up to now the thyroxin really has done him little good.

So the moral of this story is that you are not alone, and you have various good options to pursue.

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Hi CNV2855,

I have secondary adrenal insufficiency and diabetes insipidus. Good on you for even knowing what adrenal insufficiency is! I was sent to the Endocrinologist for blood sugar problems (due to low cortisol) and he figured things out from there.

I'd meet with the Endo again to get properly tested. I'm on replacement cortisol and has it ever made a difference - I would have been in serious trouble without it a few times when I got sick so I'm happy to have figured this out. I have to say I haven't been glutened because I'm on a very limited diet at the moment and don't eat out but you should get tested for hormone levels and then get tested for vitamins and overall health (B12 and Iron especially). If you're in an accident or a similar stressful situation and your body can't produce cortisol then it can be very serious so it's best to know.

Too bad the hospital messed up...can you see an Endo and have him supervise it? I went to a specific clinic and he stopped in a few times to make sure it went well.

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I just wanted to say that I went out and actually bought some supplements, something that I've resisted doing over the last four years that I've been diagnosed.

I think I bought Acetyl-L-Carnitine, based on the study that showed that even healed Celiacs have extremely low levels of it and in a double placebo controlled trial showed great results in alleviating fatigue. I also bought COQ10, Zinc, and L-Glutamine.

I had a huuuuuuuuuuuuuuuge burst of energy after taking them both tonight and today, but it wasn't the same type of energy that you'd expect from taking a stimulant such as caffeine. I've seen a lot of positive results from people taking the Acetylecarnitine, so I'm definitely going to keep trying it for a month and see what happens. But I am hopeful. :)

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
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