Please Help! Concerned About Potential Of Celiac.

[BKnight561]

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!!

[rosetapper23]

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.

[shadowicewolf]

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.

[rosetapper23]

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.

[BKnight561]

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?

[rosetapper23]

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!