Hairloss, Headaches, Fatigue--your Advice Is Needed!

[Teaching-ND]

I would appreciate as much input on what could be wrong with my body as possible....I will try to provide as much information as possible. Any ideas or suggestions would be a blessing.

I am a 'seemingly' healthy 26 year old teacher who over the last 2 months has been having:

*unexplained all-day headaches (back base of my neck a lot)

*fuzzy warm foggy feeling in my head that generally clouds my ability to remain focused and productive

*irritability, depression, low motivation (fed up with feeling like I am operating at 1/2 of my ability)

*Unexplained hair loss (I started with a lot of thick, long hair) and have probably lost 1/3 of it, the amount of hair I lose during a shower will plug the drain....

*Flushed or warm feelings in my face and ears (often after eating fried or breaded food, which I don't do often)

*I take fiber to relieve constipation, which is a constant problem for me/( except on weekends when I'm off work and will go to the bathroom 3 or 4 times)

*I have an aunt who has celiac disease, and asked my doctor to test for it. My blood and stool work came back negative, and I got the generic IBS diagnosis, which means nothing other than that they can't figure out what's wrong with your system....

*I had my gallbladder removed when I was 20 because I had gallstones

*I take Adderall to get me alert enough to get through the day

*I notice I feel especially horrible after eating pizza for some reason.

Thank you all for your time!

Happy Holidays!

[Brittany2]

I understand totally where you are coming from, you sound quite similar to me and a few other people on here I'm sure. It's always a cluster of odd symptoms similar to these that point towards it.

There are a few options you have, I'll explain as best as possible but more seasoned people on here can assist more!

The first is to get the Celiac blood tests done:

TTG, AGA IgA and AGA IgG

after that some peoples levels are high but many have lower so its hard to get a real diagnosis. False positives are so common its crazy. From there your doctor might:

have an endoscopy done with a biopsy of the upper part of the small intestine.

If both come back negative all hope is not lost, you have the ability to go on a gluten free diet yourself. Its tricky but so worth it if it is the cause. I know for me I had negatives on both tests but ended up feeling way better within a week and a half. It may take longer for you to feel better but everyone is different.

In the mean time make sure to have these other tests:

thyroid levels: Free T4 and Free T3 (my hairloss is due to lower FT4 levels) which many thyroid problems come up with celiac

Iron, Ferratin, Calcium, potassium, and a few others can someone help with that?

If you have any other questions feel free to email me at brittanydrew (at) yahoo.com

Hope for the best, and happy holidays!

~Brittany

[GFinDC]

Hi Teaching_ND,

Good advice so far.

Vitamin D is another one to have checked, and B vitamins. Celaic can cause malabsorption so we can be deficient in lots of nutrients. D and B seem to be common ones to be low on.

Enterolab is another testing option, they do a test for antibodies in the stool. The results won't "prove" celiac but an official diagnosis may not be all that useful anyway. There is also a home test in Canada called Biocard.

The symptoms of celiac are extremely varied, and can mimick other autoimmune condition symptoms. There is genetic testing available but 30 or so percent of USA has some celiac related genes, so it doesn't tell you a whole lot. You can have the genes and not have celiac disease, and most people with the genes don't have it.

Testing for celiac is not a perfect science. The blood antibodie tests are no use if you are already off gluten. The level of antibodies getting into the bloodstream drops off and the tests don't show anything. So if you want to get tested stay on gluten until after the tests are done.

Or bag the whole testing deal and try the diet for 3 to 6 months and see if you feel better.

[Teaching-ND]

Brittany and GFinDC,

Thank you for your nice responses! I going to be serious about going gluten free, everyone is right, it is really the true way to know if that is the root of the problem. The tests just aren't painting an accurate picture of what is wrong with our bodies. I was pretty down last night after showering (and losing another large gob of hair) and am just frustrated that no one has any answers. So it looks like I will have to over rule what they think and go with my gut (no bad pun intended) on this one and avoid gluten.

Thanks again!

Kayla

[Jean'sBrainonGluten]

Hi Kayla,

I am so sorry you are suffering this way. I agree with the recommendations of others. From my perspective it sounds like you're showing symptoms of neuro involvement

*unexplained all-day headaches (back base of my neck a lot)

*fuzzy warm foggy feeling in my head that generally clouds my ability to remain focused and productive

*irritability, depression, low motivation (fed up with feeling like I am operating at 1/2 of my ability)

*Flushed or warm feelings in my face and ears (often after eating fried or breaded food, which I don't do often)

*I take Adderall to get me alert enough to get through the day

*I notice I feel especially horrible after eating pizza for some reason.

And possibly hormonal/adrenal involvement

*I take fiber to relieve constipation, which is a constant problem for me/( except on weekends when I'm off work and will go to the bathroom 3 or 4 times)

*Unexplained hair loss (I started with a lot of thick, long hair) and have probably lost 1/3 of it, the amount of hair I lose during a shower will plug the drain....

In addition to the supplementation and testing others suggest I have suggestions.

1. For the neuro issues - consider looking at standard migraine trigger foods like onion, garlic, preserved meats, citrus, aged cheese - this could explain why pizza is so bad. Check any meds you are taking in a drug reference to see if they are contra -indicated for use with MAO inhibitors. The worst headache in my life was triggered in part by taking Cipro for a bladder infection - unfortunately all Cipro related drugs ( and several others ) are know to cause swelling in the brain, which obviously makes them bad in your situation.

Also, consider using an ice pack when you have a headache - put it on the base of your skull for 5 minutes or so (wrapped in a towel) then move it to different parts of the head. This helps me when no medications touch the headache.

Do you hear the pulse in your head during these headaches? IF not don't worry but if so, it's called pulsatile tinnitus. I have that and so try to avoid tylenol and basically every other over-the-counter pain med since they seem to make it worse. The ice helps. Eventually I found that seeing a good chiropracter wouldn't make the headaches disappear but kept them from getting worse - something to consider.

2. Be really aware of cross contamination and the way hidden wheat derivatives are often used for flavor or texture. I found that simply going wheat free wasn't nearly enough.

3. Do you any pollen allergies? Before going wheat free I had tons off pollen allergies, especially to grasses. If you have these you might consider going completely grain free. It's a pain but it made a huge difference for me. If you decide to do this I can give you suggestions for some coping or you can look at information for the Specific Carbohydrate diet (though that is even more restrictive).

4. For the constipation, it can be a symptom of thyroid insufficiency and also related to migraines. For me even if my migraines are under control and my thyroid and adrenal numbers look good I have to work on this issue so you might try some of the things that work for me.

Ginger Tea every morning, live culture yogurt and an acidophilus tablet every day, Pilates core exercises at least 5 days a week ( the Brook Siler book was helpful to me), lots of water, and time - even with all this my gut is slow and I find that if I don't give myself time in the morning to let my gut work and have a BM then I get in trouble - that could explain why you have the work/weekend pattern.

5. Even with the negative lab work you could have gluten intolerance, which can't be detected with current lab work, or wheat or grain allergy, which also is variable in whether it can be detected. There are two youtube videos that I found helpful in understanding the differences

9minutes from Gluten Intolerance Group

long - from the William Warren Celiac center in San Diego - I found the first 30 minutes and last 5 minutes (Q&A) to be most helpful.

Good Luck and keep us posted!

[Teaching-ND]

Thank you "Jean'sBrainonGluten" for the wonderful advice and insight. I have been cutting back on gluten a lot and have started to feel better! I am also not drinking cow's milk, I switched to Almond Dream. i hope I have found my own answers.

Thank you and happy holidays!