Kind Of Confused, Could Use Some Expert Help

[brendab]

Ok, I'm pretty much in a brain fog, my baby doesn't sleep at night more than an hour at a time or less so please bare with me.

2 years ago I went for allergy testing, both delayed and immediate. Good news was that I have no immediate allergies but I have several delayed. One is gluten. I also have many health issues that I could never get worked out, they are as follows:

depression

anxiety

heart palpitations/panic attacks

insomnia

chronic fatigue

migraines

mental fogginess

small attention span

occasional, severe stomach and intestinal pain, not always producing anything

stabbing pain below the rib cage, about where the stomach would be

Gosh, can't think of anything else at the moment.

Anyway, when I had these allergy testings done I also had hair samples taken and I am on the deficient end of some of them, including:

calcium 378 (normal range 475-1500)

magnesium 25 (normal range 45-180)

phosphorus 298 (normal range 350-600)

cobalt/B12 0.005 (normal range 0.013-0.050)

Iron 5.6 (normal range 5.8-14)

rubidium 0.030 (normal range 0.030-0.25) so I am right on the border with that one

Also, my nickel is 1.1 (normal range <0.40) and is a bit over the 95th percentile and I think that may be from my metal fillings.

So, I went on an elimination diet and the 2 things that really bugged me were dairy and gluten. Dairy seemed to cause horrible cramping and diarrhea and the gluten accounted for everything else on the list above. So I went to see an GI doc and had a full panel done, including Celiac but everything came back as normal. I had already been off gluten for quite some time though so I know the Celiac panel was compromised and inconclusive.

Fast forward a bit to last November when I became PG and I found I could once again eat both dairy and gluten products and now I am confused because I really thought I had some issue with both foods and malabsorbption associated with Celiac. I had no issues during my PG except with calcium/mag. that were causing restless leg syndrome so I upped that intake and took care of the problem. The other issue I had was severely low iron, got as low as 8.2 but still able to eat everything. Go figure!

Now as I am over 4 months post partum, my symptoms are slowly returning. DANG! With the exception of my iron! I gave blood just last week and I was told my iron was fine at 13.5 Honestly I don't know what level is normal and what is low and can't seem to find that information on the net anywhere. Can you say, "needle in a haystack"? LOL

Anyway, I am sure I am not making too much sense but somebody suggested that since my baby is such a poor sleeper that I eliminate both dairy and gluten, not knowing I had done so before becoming PG so here I am eliminating it again in hopes of sleeping again at night. My panic attacks are showing up again as well as the stabbing pain in my stomach but that is only occasionally.

I am not sure what I am getting at and this is turning into a novel but I've not been diagnosed as Celiac and I am afraid that if I don't know for sure that I will always be in the dark and perhaps be undiagnosed for other complications brought on by Celiac. KWIM? (osteoporosis)

I guess my question here would be, do these deficiencies fall in line with Celiac or am I just needing to take more supplements? I try to eat a very healthy diet so I was surprised to see that I am so deficient in all of these things, especially calcium! I take multi-vitamins with calcium and am a HOUND for dairy! What gives?

[missuswayne]

Hi - I'm rather new to celiac and gluten-free stuff, so I can't speak to your main question at all (sorry!). However, your mention of insomnia, anxiety, depression, brain fog, and especially the heart palpitations makes me wonder if your thyroid is involved. I'm not a doctor, but I had postpartum thyroiditis (hyperthyroid), and that just stood out to me. Mine was diagnosed with a simple blood test.

[ShayFL]

I second the Thyroid. Ask your doctor for a complete panel: TSH, Free T4, Free T3 and both antibodies.

[ravenwoodglass]

You should ask your doctor for copies of all lab work, actual copies not just his findings. On those will be the reference range for the tests. With celiac testing a low positive will sometimes be deemed a negative by the doctors, it is not. Even one point into the positive range is positive. It is a good idea to keep copies of all labs done.

One of the things that struck me most about your post was your statement that during your pregnancy your symptoms were relieved. That happened to me also. I don't know why. When they came back for me after delivery they came back hard and then escaleted from there. It would be another 15 years before I was finally diagnosed.

If your diet is good and you are taking supplements then there is something that is preventing you from absorbing. That something could very well be celiac. If you are not at present gluten-free you may want to have the celiac panel rerun. Or you could return to the diet strictly. Are you breastfeeding? If you are and you are consuming gluten and your little one is sensitive to it that may be keeping him from sleeping. Also watch the little ones growth charts, a falling on the chart from where your baby was at birth would be indicitive that he may have also have a problem with gluten. It is strongly genetic.

It isn't going to hurt you to do the diet strictly for a few months and see if it helps after you have had any testing that you want to have done.

[mftnchn]

Maybe you have already gone gluten-free again, but if you have been eating gluten regularly for months, why not redo the celiac panel? It might be positive and you'll have further support for continuing on a diet.

[brendab]

Thank you for all the great responses. I have had my thyroid checked, twice and both times came out normal so it can't be that.

I am BFing my little guy and this was my biggest driving force to get my butt back on the wagon, along with ever increasing stomach pains. I've been strictly gluten-free/CF for 2 days with no good results as of yet, he's still waking every hour. I'm just frustrated to tears about sleep, otherwise he's a good baby! He's even quite large for his age so I don't think it's affecting him that way, just sleep. A couple of my children have dairy sensitivites and this little guy is rather gassy; funny thing is that it doesn't seem to hurt him. Regardless, if gluten affects MY sleep perhaps it affects HIS sleep. KWIM?

Perhaps I will visit the GI's office today, thanks for the advice!

[ShayFL]

I was told my thyroid was "normal" for 12 years when in fact I was severely hypothyroid. Once I printed out the new TSH ranges from an online source, took it to my doctor, it was only then that I got properly diagnosed.

Your health is in your hands. If you want to just trust that "normal" is normal, that is up to you. But if it was me, I would ask for copies of my lab results. Then I would take those thyroid results and go to www.stopthethyroidmadness.com and see if I still felt confident with my doctor's "normal".

My Mom was also told her thyroid was "normal" for many years. But she had Hashi's. Come to find out we dont make a whole lot of IgA in our family, so the antibodies dont go too high. They dont test IgG for thyroid unfortunately. Anyway, her "normal" was left alone for long enough that the Hashi's completely destroyed her thyroid and caused cancer. She now has had her thyroid removed.

I am sooooo thankful that I am no longer "normal" and have my life back.

My thyroid issues intensified after childbirth. It is a common trigger.

And the reason you feel better whilst preggo is that both Celiac and Hashi's are AUTOIMMUNE diseases. When you are preggo your body drastically turns down the immune system so that you do not reject the fetus (the fetus is a foreign object to the body). In the process of this immune system running at a lower idle, autoiimmune attaacks also lessen (hence less symptoms).

I feel for you because I was exactly in your shoes 12 years ago. No Internet for me back then and letting doctors tell me over and over I was "normal". It just got worse until I found those new TSH ranges and took them to my doctor so I could be treated. I shudder to think where I would be if that had not happened. Perhaps like my Mom with thyroid cancer......

[Mother of Jibril]

  ShayFL said:

And the reason you feel better whilst preggo is that both Celiac and Hashi's are AUTOIMMUNE diseases. When you are preggo your body drastically turns down the immune system so that you do not reject the fetus (the fetus is a foreign object to the body). In the process of this immune system running at a lower idle, autoimmune attacks also lessen (hence less symptoms).

That has definitely been my experience... after giving birth my autoimmune problems flare up BIG TIME. All the symptoms of hypothyroidism (feeling cold, depression, anxiety, hair loss, constipation) and celiac (weight loss without dieting, abdominal pain, gas, terrible bloating), plus joint pain...especially in my shoulders and knees... which makes me worried about another systemic disorder like RA or lupus popping up in the future. Thank heavens I figured out my gluten problem.

People always said I looked great while I was pregnant Turns out there was a reason for the "glow."

[brendab]

I do have a new doctor who is great at listening to me so I should ask him to re-check it. So much to do and so little time! Now I am wondering if I should NOT go gluten free until a re-test? I am so confused about what I should and shouldn't do. Gluten free feels like a death sentence at first; I am giving up so many favorite foods!

Where's my EASY button?