What Is Going On? Can You Help?

[proud-armywife]

I am diagnosed celiac with severe malabsorbtion issues. Anemia-being the worst. I am hoping you may be able to help- I started to exercise recently because I have become very weak. Within two weeks of starting I gained about 10 pounds and my period went awaycompletely.Also got a very intense yeast infection that was difficult to get rid of. The physical exercise is very difficult as my blood count recently was 26 and ferritin was 1.4. I stopped because of the missed period and weight gain. Two weeks after I stopped I have had a VERY HEAVY LONG(14 day) period, dizziness, nervousness. I have dropped about 5 pounds and I have joint pain mild shoulder pain- what in the world is going on. Have you experienced this? I feel like I am an old person. And my doctor doesn't understand this disease.(military spouse) HELP!!!!

[ravenwoodglass]

Has your doctor checked you for other issues like thyroid problems, as one example.

[proud-armywife]

yes I have had my thyroid checked, it is borderline high and fluctuates last they checked. Not enough that they wanted to do anything though. Also had laproscopy to check girl parts with no significant problems.

[liss7217]

yes I have had my thyroid checked, it is borderline high and fluctuates last they checked. Not enough that they wanted to do anything though. Also had laproscopy to check girl parts with no significant problems.

Are you experiencing any other symptoms besides the weird periods, weight gain, and fatigue? When they tested your thyroid did they also check for thyroid antibodies? My thyroid fluctuates too and my period are often irregular but I have Hashimotos and PCOS which can make me feel very fatigued at times. How is your appetite and are you sleeping ok?

[sb2178]

Okay, someone should do something about the iron levels. Reading the lab values I'm used to seeing, your ferritin should be over 15, give or take. It's basically zero. That'll make you feel like you've been run over by a bus. You're on supplements? Have your values improved at all (or have you not been taking them long enough)? Can you push for IV iron if not? IV iron has some risks, but if you're that sick, it might be worth it for quality of life improvements.

Are you still being exposed to gluten? Any new foods? New places to eat, new job, new school for the kids, new pet food, new cosmetics, etc.?

[thleensd]

I am diagnosed celiac with severe malabsorbtion issues. Anemia-being the worst. I am hoping you may be able to help- I started to exercise recently because I have become very weak. Within two weeks of starting I gained about 10 pounds and my period went awaycompletely.Also got a very intense yeast infection that was difficult to get rid of. The physical exercise is very difficult as my blood count recently was 26 and ferritin was 1.4. I stopped because of the missed period and weight gain. Two weeks after I stopped I have had a VERY HEAVY LONG(14 day) period, dizziness, nervousness. I have dropped about 5 pounds and I have joint pain mild shoulder pain- what in the world is going on. Have you experienced this? I feel like I am an old person. And my doctor doesn't understand this disease.(military spouse) HELP!!!!

-You're definitely not alone.

-You'll have to learn more than your doctor, because they probably won't go out of their way to do so.

I had similar iron issues (ferritin below 2, iron in the teens). Your doctor should be saying to you "how are you still walking"... and shoving iron at you. The only way I got mine into the borderline normal area was liquid iron.... the stuff is nasty, but it helped. Also read up on iron absorption. Things like calcium taken with it inhibits it. If it is stubborn, some people (here even) have gotten IV iron.

I can't really tell by your post, but inferring from your join date, you've been gluten-free over a year and are just now starting to exercise because you were too weak? That's just a guess, but I can relate to that, too. I can only speak from my experience, but for what it's worth, I find that if I push myself too hard at this point, my whole body gets wacky. I get skin infections, anxiety and more. If your iron is low, you're probably low on some other things as well (maybe D and B12? Those are common)

The body has fascinating ways of sending us messages (to which I often respond "what the @$#& are you trying to tell me, body!??") I wonder if it could be your body's way of telling you to slow down a bit and be gentle with the exercise? Take your vitamins and supplements, be diligent with your food, and keep looking. The answers are out there.

Best.

[mushroom]

If you are anemic and have such an iron deficiency (and possibly others - get all your nutrient levels checked), it is no wonder your body doesn't like the exercise very much. You are using up too much of its resources. Concentrate uour energy into healing and building up your nutrient levels. I would confine my exercise to walking for now until you are stronger.

[proud-armywife]

Thank you all for your advice. We recently moved and I have not had a chance to push for a doc here. It is exhausting trying to push your way trough the system. I have been practicing a gluten free diet for over a year. But with that I have to add that I have a family that does not understand the disease, and my 4 kids are a bit reluctant to change their eating habits. I have had slips-not knowing that the food had gluten, and I am thinking the cross-contamination thing may be affecting me. I am very isolated here, and I don't have any support system in place. My hubby is gone for awhile. And really I feel like they diagnosed me and sent me away. Very frustrating. I take integra f which is wonderful and my last iron infusion was 1700 mgs a year ago.My new doc handed me pills and said take these three times a day! You know how it is... I am very lean with saddle bags and with my hubby gone I wanted to slim them down and look good for his return. I got an elliptical and committed myself to 20 minutes every other day. I never couldn't move something before or run somewhere, but in the past few years I have really lost strength, memory,and it has changed me alot. I was told recently by a nurse that the excercising to my body was like someone with anorexia. And it is not a good idea for cardiac reasons.There are some days when I feel like I am moving so slow my system is just going to stop-I just feel very very much alone, I am frustrated, and I am so tired of thinking I'll go to bed and tomorrow I will feel better and that day never comes. I have four little children three dogs and no time for this. I really am trying very hard.Thank you for listening and all of your replys it means so much.

[mushroom]

You are having a tough time of it. It is so much harder when you feel isolated and without a support system to back you up. And with four children and three dogs a lot is being asked of you. Your poor body needs to regain some health to deal with all this. I would encourage you to make the effort to get a doctor where you are now so that you at least have some medical backup. That can make a difference. I would also encourage you to tighten up on your cross-contamination issues, because even though you are not purposely eating gluten, if it is sneaking in it is doing you harm and preventing you from healing fully. Are your children old enough to fully engage in the process of not making mommy sick?? If you explain it to them this way perhaps you might get their cooperation more. Explain that if they help you out you will feel better and be able to do more fun things with them. But that if you get gluten it makes you too sick and tired.

Do you live on base? If so, is there a club of some kind you could join where you could make friends and get a support system going? Even something involving your children where you can at least meet people. Because you need companionship with your husband gone, otherwise life just gets too overwhelming

[proud-armywife]

I don't live on base....wish sometimes we did. We own a bit of land which makes it hard. Wanted to let everyone know that I went to the doc today. I lost 2 counts in blood.(24) I explained the symptoms. I was precribed medicine for inner ear problems. She said the blood count wasn't as bad as she thought it would be. And it is my inner ear. What is the definition of insanity? Doing the same thing over and over and expecting different results............I don't know what to do, I wish I could just get help. I just don't know what to do.I don't feel like this is inner ear. I take three iron pills a day-and I still dropped two points. I don't know what to do. And did I mention trhat the meds prescribed probably aren't gluten free. But take them for now to solve the issue and deal with the fact that the meds poisoned me later..........Am I crazy? Maybe it is my inner ear. 24 blood count is low right? ferritin was 1.18 I feel like I am crazy.........

[Juliebove]

I don't know which insurance you have. My husband is Coast Guard and daughter and I have Tricare Standard. Actually mine is the For Life now because I am on disability but it is still treated as standard. That means I do not have to see military Drs. and can see whoever I want, provided they take my insurance. Yes, a lot of Drs. do not take the insurance.

If you can, you should see an Endocrinologist. If you can't do this on your own, try to push for a referral.

Do you eat soy? I find for me, it really messes with my thyroid. I do still consume things (mainly supplements) that contain soy lecithin and I don't worry so much about soybean oil but will only buy things containing it if there are no other options. I do know that most restaurants use it in their cooking. But... I will not eat anyting with soy flour in it. I quite eating soybeans. I used to eat them roasted. I ate Tiger's Milk bars. And I ate Slim Fast bars containing soy. I am no longer on thyroid meds and feeling MUCH better.

You might also try eating more foods with vitamin C in them because it helps with the absorption of iron.

[Bamberz1977]

I am a former Army wife and I completely understand the difficulties of trying to get the care you need within the system. I did discover, however, that here at Bragg at least the squeaky wheel generally gets referred to somewhere off post.

[GFinDC]

yes I have had my thyroid checked, it is borderline high and fluctuates last they checked. Not enough that they wanted to do anything though. Also had laproscopy to check girl parts with no significant problems.

You might have Hashimoto's thyroiditis. It can cause high and low thyroid hormones, basically fluctuating. There are tests for anti-thyroid antibodies.

I don't see how your ear could cause low iron unless it leaks out when you tilt your head sideways? Funny doctor there.

It sounds like you have malabsorbtion going on. If you are low on iron then there may be a problem absorbing it. You may need to really tighten down your diet and household to get your intestinal villi healed.

Kids without a mommy are going to have to eat crap for dinner. They need to adjust for your health. The gluten-free diet is a very healthy diet if you stick with mainly whole foods cooked at home. It would be a good diet for your kids to follow too. No preservatives, no food colorings, no soy, etc.

[ravenwoodglass]

And it is my inner ear. What is the definition of insanity? Doing the same thing over and over and expecting different results............I don't know what to do, I wish I could just get help. I just don't know what to do.I don't feel like this is inner ear.

Are you having balance issues? Is that why she said it might be inner ear? Balance issues with celiac is due to something called gluten ataxia. People with ataxia need to be very strict generally to have it resolve. Ataxia usually is associated with brain lesions called UBOs that can be seen as white spots on a brain MRI.