• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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
0
BKnight561

Please Help! Concerned About Potential Of Celiac.

Rate this topic

Recommended Posts

Hi Everyone....I'm really hoping I can get some help here, and hoping I don't come across like a hypo-chondriac.

The past few years have been medically very difficult. I'm a woman, in my thirties, in the military and a mother of two. Three years ago, I went to the ER for a horrific migraine. In true military fashion they strapped me down and gave me a spinal tap (came out clear) and only then did they run a blood test. I was yelled at for being "malnurished." I didn't understand...I eat all the time and take vitamins.

Fast foward a few years, on and off sick, exhausted (I figured I was working too much), headaches, anemic, hair loss, dermatitis, constant reflux. The reflux was so bad, the acid was eating away my vocal cords. I live on Zantac and Nexium now. I was mute for three months. After six months of wrong diagnoses, I was sent to a civilian specialist in Philly. A surgeon. Brilliant man who I consider responsible for keeping me speaking after three reconstructive surgeries. He SWORE I had signs of hypothyroidism. Three tests - all negative. He was baffled. Then, my molar broke. I've had one cavity my entire life....and now my teeth are breaking.

Then, last night, I saw a news program talking about this strange thing called Celiac Disease - for which hypothryroidism symptoms are often confused. They started listing the symptoms. I pulled out my med record (yes - all 6" of it from just the past few years - I have it all here) and started looking at my recent blood panels and tests.

I'm anemic, Vit K, Vit D and Alkaline Phosphate deficient. Not just a little - MARKEDLY. Like, minimum of 10-15 points below the low baseline numbers on all of them. Low cholesteral and very low triglicerides (with **** next to them).

My teeth are literally breaking, losing my hair, dermatitis, and severe reflux has damaged my esophagus and permanently damaged my vocal cords (three surgeries to keep me speaking over the past year). Blurred vision, constantly sick, fatigued, and diarrhea and/or painful constipation with a ton of gas. Oh, and I didn't hit puberty until I was 16. I'm petite - literally 4" shorter than my shortest female family members. Both brothers are over 6' tall. My father died of Diabetes complications. My children have eczema (from me?).

Causal? Maybe not...I guess my question is this: Am I rightly concerned?? Or am I losing my mind? Please help!!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I think you've found the answer you've been seeking! Your medical records read just like ours. Now, if you get tested, ask for a FULL CELIAC PANEL. They may not even know what that is, so they will have to find out. If, however, the blood tests come out negative, fear not. Simply go on a very strict gluten-free diet to find out whether or not you're able to resolve your physical issues that way. You see, celiac can cause your symptoms, but so can gluten sensitivity (which cannot be tested for). I strongly suspect that once you remove gluten from your diet, you'll begin to see improvements in your health. It may take a while for certain issues to resolve, such as the breaking teeth and nutritional deficiencies because it takes a while for the lining of the small intestine to heal. However, your digestive complaints may start resolving sooner. For many of us, while some symptoms diminished quite a bit, it took 18-24 months to fully feel well again.

I'm sorry that your health had to suffer so severely before you discovered what is wrong. Shame on your doctors for not suspecting something as common as celiac disease. Unfortunately, when they were in medical school, they were taught that celiac is very rare and is usually outgrown. This information is patently false, and the AMA has been trying to correct that misinformation during the past five years. Your doctors probably didn't get that memo. They need to be educated so that they understand that they should ALWAYS test for celiac when nutritional deficiencies or digestive complaints don't resolve. However, again, if you test negative for celiac, please consider following a gluten-free diet.

Lastly, and this is important: You are not allowed to serve in the military with celiac disease. If you wish to continue serving our country, you may wish to simply follow a gluten-free diet and let things lie. Your skin condition might be Dermatitis Herpetiformis (DH), which will resolve once you stop eating gluten (and iodine for a while, too). I know a man who remained in the military for years even though he suffered terribly from DH. He told me that his doctor understood that he had to have celiac in order to have DH, but he didn't include that in his diagnosis so that my friend could remain in the Air Force. My friend was treated with Dapsone for the DH and put up with the other symptoms until he retired from the Air Force. If you end up in a situation where only military food is available, you can always say that you have a gluten allergy or that you're gluten sensitive--just don't say that you think you have celiac.

Take care....and I feel very strongly that you're about to regain your health.

  • Upvote 1

Share this post


Link to post
Share on other sites

who says you aren't allowed to serve? I'm sure she could work on base and whatnot, as long as she isn't sent into deployment. Lying about it won't help much either because its to my understanding that military personnel go through medical examinations every so often.

At any rate, get the full celiac panel done as well as the genetic test. Celiac is a genetic disease and it could potentially affect your children as well.

Share this post


Link to post
Share on other sites

Shadowicewolf,

Please don't shoot the messenger--I'm just trying to make the poster aware of a possible battle she may face. Who says she can't be in the military with celiac? The military! Anyone with celiac is NOT allowed to enter the military (and being the mother of a 25-year-old son, I'm comforted that he cannot be drafted if the draft is reinstated). It could be that she will be met with understanding, but she needs to be made aware of the legal fight she may have on her hands. In the future, once the military understands how many people actually have celiac, it may change its rules on celiac, since it is merely a problem of feeding us that stands in the way of our serving our country. All they would have to do is ensure that the military food be made available gluten free. I believe that Israel ended up doing this (or is considering doing so) so that young people with celiac could still serve.

Share this post


Link to post
Share on other sites

I really appreciate your advice. Since celiac disease is considered an auto-immune disease, it will trigger what we call a MEB (Medical Eval Board) and most likely lead to discharge. :-( I'm ok with that....I'd rather be healthy. There are no rumors of that changing any time soon, especially with all the cuts they're making. I'm already on shore-duty, so that doesn't make a difference either.

I go in on Thursday, and I'm going to request that full panel. You mentioned eating iodine...funny. The dermatologist told me to avoid SHRIMP. Said it's probably flaring up the dermatitis..?? I told her I eat it because I'm anemic. She wants me placed on iron--shots. I need this panel done before they start treating more symptoms inappropriately. Thank you again.

My next question is this, then...let's say I DO come back positive for celiac via blood screen, what's the next step in the process, and how do you recommend I prepare?

Share this post


Link to post
Share on other sites
Ads by Google:


Regarding the iodine, many of us with DH need to eliminate it for a while because it seems to exacerbate the condition. Because iodine has been found to exacerbate a number of dermatological conditions, it's common for dermatologists to recommend avoiding it. As for your iron anemic, using iron shots is the old-fashioned way to deal with it. Nowadays, doctors prescribe intravenous iron infusions. Your doctors are probably unaware of this option, so you might have to educate them about it. You'll only need to get the infusions once a week for four weeks. After that, if your numbers fall again, you'll need to through the four-week infusion cycle again. If you have celiac and a gluten-free diet helps you recover from anemia, you can then discontinue the infusions.

Regardless of how your blood tests turn out, you should try to follow a gluten-free diet afterward. There's a great thread here on the Forum entitled either Celiac 101 or Gluten-free 101 (sorry--I can't recall). Someone will jump in shortly, I'm sure, to help you find the correct thread. Generally, though, when you begin a gluten-free diet, it's best to stick with natural foods (meats, dairy, vegetables, fruits, nuts, rice, etc.). This way, your chance of cross-contamination goes way down. Also, if you attempt to eat the gluten-free versions of your favorite foods right away, you may react to the special grains and/or gums that are used and may think that the gluten-free diet isn't helping you. After a few months of eating just natural foods, you can begin to explore gluten-free alternatives....and there are some very good ones out there. Just read some of the postings on this Forum--you'll get lots of great advice!

Also, you should begin addressing your other nutritional deficiencies as soon as possible. For your Vitamin D deficiency, you'll need to take Country Life Natural Vitamin D. The reason for this is that you also need to take Vitamin A at the same time (your cells have two A receptors for every D receptor), and it also contains medium-chain triglycerides to help you absorb both Vitamins D and A. I actually was taking 50,000 iu's of Vitamin D daily for a year--and I couldn't overcome my Vitamin D deficiency. However, when I attended a celiac conference last June in Seattle, one of the presenters discussed how taking Country Life Natural Vitamin D can help celiacs overcome their Vitamin D deficiency--and after only a few months, my Vitamin D level was extremely healthy (and I only take 400 iu's a day!).

You're heading in the right direction....now go and get healthy!

  • Upvote 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,915
    • Total Posts
      943,492
  • Member Statistics

    • Total Members
      67,088
    • Most Online
      3,093

    Newest Member
    Shaunathedead2112@gmail.co
    Joined
  • Popular Now

  • Topics

  • Posts

    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
  • Upcoming Events