My Health Is Going Downhill

[elle's mom]

I don't know what my problem is and I was hoping someone may be able to help. Quick recap of me: I've always been small, moody/irritable, had anxiety, hungry all the time, and need naps every day. Developed acne only in my twenties (now in my 30's, still an issue), had low iron when I tried to give blood as a teenager. My iron has fluctuated between normal and borderline low different times when checked during pregnancies, I've taken iron on and off with no apparent affect. Every time I've been pregnant my mood issues have all but disappeared, so does the acne. They both usually come back within the year after having my babies; since I've had four I now notice this pattern.

I've been gluten-free/DF for several months (about 5ish). My youngest child is now 7 months and I feel that I am really going downhill to the point I am worried about my health affecting how I am able to take care of and interact with my kids. I am getting REALLY weak, can hardly walk upstairs carrying baby, I'm worried I will fall at some point. I have been extremely moody/irritable, having angry outbursts, feel extremely anxious and stressed out (I do have some valid stress, but I'm not handling it the way I know I could), and super tired at times. Some days are better than others, but fewer and fewer good days lately. Recently I have also had some heart palpitations (noticed more when trying to drift off to sleep), have been getting light-headed, and now some ringing of the ears; this is all new. I recently went for a check-up to my dr. (ob/gyn) and had the following tests:

BP-checked several times, all normal

CBC-all normal (he says this indirectly says my iron is OK)

thyroid-normal

testosterone-normal

cholesterol-213 (he suggested to watch my diet, which I already do and he did not run a full lipid profile, which I've had very high HDL in the past so I'm not really worried about cholesterol)

I asked him to check my iron, testosterone (because it was high once six years ago when checked, I wondered if it could be related to something), and cholesterol. He does not seem concerned about me at all. He told me because I've lost all my baby weight (gained 45-50 pounds each time, I weigh about 110 normally) easily after each baby that I have a "good metabolism" and that I just have a busy life. It doesn't feel normal to me, I'm too skinny and am starting to feel like I can hardly function. I do not exercise because I am too weak/tired/do not have time and I eat like a horse, lots of protein and since going gluten-free/DF very healthy: chicken, fish, veggies etc. He suggested I work-out and take a day per week to myself (like I have time to do either of those).

I'm taking prenatal, calcium, and 1000mcg/day B-12. Nothing seems to be helping. I don't want to just take anti-anxiety meds (which hubby is voting for), because I think that would just be masking the real problem, which I am clueless as to what it could really be. Plus I am nursing and most meds aren't safe for breastfeeding. I just know that when I'm pregnant I am a way better person. I thought gluten free was the answer, and I had such high hopes, but I almost feel worse than ever. Maybe it's just hormonal, I really need to do something though, any ideas? Please make any suggestions possible, I am feeling desperate. Oh yeah, also I have NO libido, none at all. Dr. chuckled when I mentioned this.

[Brooklyn528]

I was having the same kind of problem after going gluten free. I was still super tired all the time, moody, bad acne, just all around not feeling good after having my son last year. I was wondering if you have had your liver enzymes checked. I found out that on top of my celiac disease, I have Autoimmune Hepatitis. If you look it up, most of your symptoms match. To let you know, I never had aby jaundiced even though my liver enzymes were through the roof. Please let me know when you find out what your numbers are.

Brooklyn

[GFinDC]

Hi Elle's Mom,

You may have other intolerances besides gluten. You could try an elimination diet to find them. If you do make sure you eliminate your vitamins and meds as well. Also coffee, tea soda, and anything else you consume is suspect. Sometimes it ends up being a bit of a food detective work to find the problem.

Another thing that helps is to eat a whole foods diet, and eliminate processed foods. At least until you have stabilized and can recognise when something new you introduce to your diet is causing a problem.

[Roda]

You should get a full panel for iron that includes ferritin. Unfortunately doctors have a habit of only looking at the CBC to access iron status (hemeglobin and hematocrit). The tests I usually get for my iron are: IRON, TRANSFERRIN, TIBC, and % Sat and FERRITIN. When my ferritin was chronically low I had rapid heartrate, sob, fatigue and lightheadedness. My ferritin levels are up some now and I am starting to get new hair growth. Pregnancy and breast feeding can take alot of nutrients from your body for the baby. May be worth it to get them checked especially iron/ferritin and vitamin D. Also alot of women post partum can develop hyperthyroid issues. I am usually hypo and during my pregnancy they would have to keep increasing my dose. After about 3-4 weeks post partum I would need my meds lowered (still on the pregnancy dose) because I would get hyper. Although after each pregnancy my hypothyroid got worse and needed more meds after pregnancy than before. As for the thyroid tests the doctor need to run more than a TSH. You need a TSH, free T3, free T4 and if suspected hashimotos, thryroid antibody tests. I was also irritable and moody and after starting a mega dose (dr. prescribed) of vitamin D, (mine was very low), the irritability and moodiness seemed to slowly go away. I hope you get to feeling better soon.

[nasalady]

Jackie, the other posters have given you a lot of good advice. I just wanted to affirm that it's very possible (highly probable even) you have one or more additional autoimmune disorders on top of celiac disease.

Besides celiac, I've been diagnosed with autoimmune hepatitis, psoriasis, Hashimoto's thyroiditis, and rheumatoid arthritis + SLE lupus = "rhupus". I also have fibromyalgia. I'm experiencing a lot of the same symptoms that you are, and I'm currently in a rhupus "flare".

My daughter Cheryl has lupus too, but she has SCLE (subcutaneous lupus erythematosus). She thought she just had really bad acne before diagnosis.

Have you ever been tested for other autoimmune disorders?

I hope you feel better soon!

JoAnn

[GottaSki]

I second ruling out other autoimmune diseases. Although my digestive track improved within the first few months of gluten-free, I became much sicker - severe fatigue, fog, joint stiffness, in the morning I am very stiff but okay once I get moving, but am sore and foggy by 3pm - can't walk stairs by 4pm. I am slowly improving since being diagnosed with Fibromyalgia after being diagnosed with Celiac. Doctors have been testing me for AIs for several years, but my blood tests never indicate inflamation which would indicate Lupus or RA. The negative blood along with my worsening symptoms led to the Fibro diagnosis.

Forget if you mentioned if your thyroid has been checked.

Most important, you know your body better than any doctor...keep after them until you feel confident that you have a complete diagnosis.

Good Luck.

[elle's mom]

To any who suggest ruling out other autoimmune disorders: what type of doctor would be best to do this?

I only have my OBGYN and he obviously is not comfortable addressing my issues as he thinks exercising and free time will cure me. The problem for me is that with a super high insurance deductible, any wasted trip to the dr. is also wasted money (aside from wasted time on an already busy schedule). So basically, I would like to cut right to the chase (so to speak), I was thinking maybe an endocrinologist, but I'm not sure; what do you all think would be best? I probably need to get a PCP but I feel like they will probably just refer me anyway.

Also, for those with autoimmune hepatitis do you take meds that relieve you from your symptoms? Thanks for your suggestions everyone.

[Brooklyn528]

About the AIH, You can have you PCP check your liver enzymes(LFT's) and your ANA level. These are the tests that are used to diagnose AIH. If your liver enzymes are normal, then it's not AIH. I am on two different meds to control my AIH and to try to get me into remission(AIH is a chronic condition, there is no cure, but lots of people do fine after treatment). The first drug that they put me on was Prednisone. This is used to stop your immune system completely so it stops doing damage. The second drug they put me on was Imuran. This is the maintenance drug. After you start Imuran, then they begin to taper your dose of Prednisone until you are on the lowest dose possible. Some people can go off of both drugs and stay in remission, but some have to be on the drugs lifelong. The Prednisone starts alleviating symptoms almost immediatly.

Hope to be of some help,

Brooklyn