Need Help Figuring This All Out

[HopefulMama23]

Hi!

It's been a while now. I'm 5 months gluten-free, and honestly, it's easy now. I don't even think about it.

All that said, I am still struggling. Here is my story:

Nine months ago, I gave birth to my third child. She was perfectly healthy, thank god. The pregnancy, however, was very tough on me physically and emotionally (much harder than the other previous 2). And afterwards, my body just kind of went haywire. I had chronic diarrhea, rapid weight loss, hair loss (much more significant and scary than my previous post partum shedding from the other pregnancies), skin issues, teeth issues, fatigue, and depression. I ended up being tested for celiacs (blood test) and it came back negative. However, my 90+ year old grandmother has ahd celiacs for 60 years, and her story was so similar to mine that I tried eating gluten free anyway. And it helped a LOT- the digestive issues dissipated, slowly, the hair/skin/nails/teeth stuff slowly got better, and along with that the depression faded.

BUT- fast forward to now. About a month ago my body went haywire again, but in the opposite direction. Rapid heartbeat, horrible insomnia, anxiety, and MORE hair loss.

I've been to my GP, he thinks it could be thyroid, and I'm at a loss. I was SO hopeful that eating a clean, gluten-free diet was the answer to my heath issues. And to be experiencing a whole new batch of stuff seems, well, unfair. Not to mention scary.

Frankly, I am tired of thinking of myself as "sick". If I have a thyroid issue, a pituitary issue, an anemia issue, etc- there's one more thing (in addition to celiacs) that i will have to constantly monitor. I am tired. I want to think of myself as strong and healthy.

SO- that's my sob story. Any insight? Has anyone gone gluten free only to find other underlying issues? And what does the insomnia/anxiety/hair loss symptoms sound like to yall? Is that thyroid? Vitamin deficiency? Adrenal?

Anyone?

Thanks! I'm desperate (and sad).

[Marilyn R]

I really hope you can figure it out soon.

Many people develop other food intolerances like dairy or casein, soy, nightshade, corn after going gluten-free. Others can't tolerate the alternative "safe" grains or legumes. What are you eating and drinking.

I had the hair loss, depression and insomnia when I developed new food intolerances.

You could also have a vitamin defficiency. I'd ask for blood tests on D, thyroid, B-12, iron...somebody else will post with more suggestions.

It must be really difficult with all the Mom responsibilities. I had a hard enough time just taking care of myself when I couldn't sleep and was so depressed. Sending you hugs (((( ))))), hang in there, it will get better when you figure out what else is bugging your body.

[HopefulMama23]

I really hope you can figure it out soon.

Many people develop other food intolerances like dairy or casein, soy, nightshade, corn after going gluten-free. Others can't tolerate the alternative "safe" grains or legumes. What are you eating and drinking.

I had the hair loss, depression and insomnia when I developed new food intolerances.

You could also have a vitamin defficiency. I'd ask for blood tests on D, thyroid, B-12, iron...somebody else will post with more suggestions.

It must be really difficult with all the Mom responsibilities. I had a hard enough time just taking care of myself when I couldn't sleep and was so depressed. Sending you hugs (((( ))))), hang in there, it will get better when you figure out what else is bugging your body.

Thanks! I appreciate your response.

What foods did you end up reacting to? And how long after going gluten-free? How did you figure out which food you had issues with?

[Marilyn R]

Thanks! I appreciate your response.

What foods did you end up reacting to? And how long after going gluten-free? How did you figure out which food you had issues with?

I felt great better, slept better and performed better for two months after going gluten-free. Then I started feeling crappy again. I searched this forum and decided to give up dairy without going through the lactose test. I immediately started feeling better.

Within in the same month, I started feeling crappy again. I'd been making stir fries quite a bit with gluten-free soy sauce.

A year later, I was using corn products like crazy, like corn tortillias, corn (on the cob, grits, corn flour to coat fried fish...and symptoms recurred. So corn was added to the list.

That's the progression of how I figured out my food intolerances.

From what I've read, these proteins are similar in structure. It causes our autoimmune system to go into attack mode.

As I look back, every time I developed a new food intolerance, it was because I kept repeating the same foods in my diet because I liked them or I was eating leftovers or I had run out of ideas. That theory could be incorrect...just a theory. And there are rotation diets...plus a lot of other diet plans that might help.

There are a few things that have never caused me problems, even if I repeat them in my diet. Here they are, because I really want to help:

Sweet potatos (nothing added, just wrap them in foil and bake or stick on the grill)

Peanut butter with just peanuts and oil (like Jiff natural). You can slap that on banana or apple slices for a breakfast or snack.

All whole or ground meat except turkey. (Allergy testing scored high on turkey allergy, and I've never really cared for it anyway).

All root vegetables have been safe, and all fish and shellfish.

All vegetables, fresh or frozen, have been good. And I've never had a problem with fresh fruit even though some people develop a fructose intolerance. And some people have problems with nightshades: peppers, tomatoes, etc.. (If you suspect those, a quick internet search will give you everything in the nightshade family. Morning glories and angel trumpets are in there too, for useless bits of information.

I learned a couple of other weird foods I'm allergic to from the allergist (clams, tomatoes, egg yolks, pecans). I never would have guessed those. I'd wait for about six-eight months before seeing an allergist though.

There is something else bugging you. I hope you can find out what it is.

Then again, there's the issue of cross-contamination ... I won't go into that, because if you search the forum there's so much information.

I really hope you feel better soon. Good luck to you!

My suggestion:

Stop dairy and soy and see if you can at least sleep. It takes a 2-3 days, but you should sleep well if one of those are the culprit.

Add back hard cheeses to see if it's just lactose intolerance. Then see if you're okay with yogurt, preferably Greek, and go from there.

I truly hope this helps you. My heart went out to you when I read your post. Hang in there, it will, I promise, get better.

[HopefulMama23]

Marilyn, you are so sweet. Thank you for taking the time to resond to me. I am having a VERY hard time these last few weeks. I had stupidly thought that not eating gluten was going to solve all of my issues- and for a while, it seemed to. But everything is back with a vengenace, and I am so defeated. Almost enough to throw in the towel and stop watching my diet AT ALL- although somewhere in my head I know that would be a bad idea.

So- a weird thing happened this week. There are a few things I measure my overall status by- these are: my swelling, my hairs lost that day, and my KP. These get worse when I am in a bad place, and better when I am healing. This week, I had one day where everything was great, and the next day where everything was bad again (for example, I lost 3x the amount of hair this morning as I did yesterday morning- yesterday was my "good" day). So, I guess my question is- when you were dealing with all of your issues, how long did it take something you ate/drank to affect you?

For example, if I ate dairy Monday night, would I lose hair Tuesday? Wednesday? The next week? I'm trying to back track and figure out why yesterday was such a good day- and what I did differently to get that day.

The things I am mostly doing/eating are:

Fruits (bananas, apples, grapes, pears, strawberries)

Vegetables (tomatoes, potatoes, greens, peppers, onions, garlic, avocaodos, squash)

Nuts (peanuts, almonds, cashews)

Meats & seafood (pork, chicken, beef, salmon, lamb)

Grains (corn & rice)

I stay away as much as I can from soy and dairy. I do not eat gluten. I do not drink coffee, but I do drink green tea with lemon. I have been trying to stay away from alcohol as well, but i do like an occasional glass of wine.

I take: birth control pills, Betaine HCL to help with absorbtion, b complex, B12, folic acid, and vitamin D. I occasionally take a probiotic, expecially when the diarrhea has been bad.

Any ideas?

[glutenfreegirl]

Hi, hang in there you will figure this out... your situation sounds completly normal (unfortunitally) to alot of what I have been reading and to my story..

I had suspected something was wrong for a long time, after a very bad case of pnemonia I suddenly became really sick never seemed to bounce back from the pnemonia, rapid heart rate, bloating, D mixed with C (this I had stuggled with for many years until going gluten-free),sudden onset of anxiety, fatigue, black circles under my eyes, water retention, muscle pain, swollen thyroid (it could get huge like I had swollowed a tennis ball), through it all I just got handed antidepressents for yrs which I would not take and kept telling my GP I was not depressed, I was depressed because I felt so terrible....I tried to pushed my GP for testing but she would not do it....during all this time I would go off and on gluten as I figured ok I must be wrong...finally one day I go so sick and as fate would have it my regular GP was away. the dr I saw that day said lets test you somethings is really wrong. She sent me for the blood test and it came back inculnlusive, so back to square one and eatting gluten....during this time I had moved across the country and found a new GP...after being my Dr for a yr or so, I woke up one day and my thyroid was huge again. he saw me right away and said hmmm lets test you for hashimotos have you not been having any other symptoms that was when we sat and talked about everything that had been going on over the past 4 yrs..he was very open and understanding. What I did not know was that when he tested my thyroid he also ran blood work for celiac again...bamb there it was clear as day, both where positive...I asked him why he tested celiac and he said because they are usually connected...that was Nov 2010...the day i cried even more, but this time in joy, becasue I knew I was not crazy all these years..I had both my children tested and they too are positive. Fight for yourself you are worth it and the boards and people are so wonderful and very knowledgable...

Big hugs

[Marilyn R]

Marilyn, you are so sweet. Thank you for taking the time to resond to me. I am having a VERY hard time these last few weeks. I had stupidly thought that not eating gluten was going to solve all of my issues- and for a while, it seemed to. But everything is back with a vengenace, and I am so defeated. Almost enough to throw in the towel and stop watching my diet AT ALL- although somewhere in my head I know that would be a bad idea.

So- a weird thing happened this week. There are a few things I measure my overall status by- these are: my swelling, my hairs lost that day, and my KP. These get worse when I am in a bad place, and better when I am healing. This week, I had one day where everything was great, and the next day where everything was bad again (for example, I lost 3x the amount of hair this morning as I did yesterday morning- yesterday was my "good" day). So, I guess my question is- when you were dealing with all of your issues, how long did it take something you ate/drank to affect you?

For example, if I ate dairy Monday night, would I lose hair Tuesday? Wednesday? The next week? I'm trying to back track and figure out why yesterday was such a good day- and what I did differently to get that day.

The things I am mostly doing/eating are:

Fruits (bananas, apples, grapes, pears, strawberries)

Vegetables (tomatoes, potatoes, greens, peppers, onions, garlic, avocaodos, squash)

Nuts (peanuts, almonds, cashews)

Meats & seafood (pork, chicken, beef, salmon, lamb)

Grains (corn & rice)

I stay away as much as I can from soy and dairy. I do not eat gluten. I do not drink coffee, but I do drink green tea with lemon. I have been trying to stay away from alcohol as well, but i do like an occasional glass of wine.

I take: birth control pills, Betaine HCL to help with absorbtion, b complex, B12, folic acid, and vitamin D. I occasionally take a probiotic, expecially when the diarrhea has been bad.

Any ideas?

Dear Hopeful,

Thank you for your kind response.

To answer your question, for me, I usually can't sleep the evening of the day I consumed gluten or one of the other bugs I mentioned. The next day I tingle all over my body, especially after I shower. But the infuriating thing when you're trying to figure this out is, depending on your body (and probably age, I'm older than you), it can take 1-2 (some people say three) days for your body to react. It's usually 8 hours for me, unless it's gluten CC, which results in D within the hour and 2-3 days of feeling bad.

Do you think you should cut out nightshades as a trial? That's a big sacrifice, but if you feel better ...

A couple other thoughts... how much Vitamin D are you taking daily and is it D-3? My hair loss has improved so much (and so have my fingernails, which previously were brittle and fragile) by supplementing D-3 between 4000-5000 IU daily.

You can't cut out soy and dairy as much as possible, you have to eliminate all sources if that is what is kicking your butt. And you have to e-mail the companies that make your BC meds and vitamins to see if they're gluten-free/SF/DF.

It will be worth the time you invest in doing this. You will minimize irreversable nerve and possibly muscle damage, be a better mother, live a happier life, sleep better, feel better...

Do it. Hang in there. You have to be a detective when all you feel like doing is crawling in a hole to die. I've been in that horrid dark space.

Your can come out, enjoy the sunshine and those little peeps in your home. Maybe you should schedule an appointment with an allergist. Things pop up that you were never allergic to before.

I really wish you the best. Wish I could offer you baby sitting services, but I live too far away.

[mushroom]

The hair loss is usually not an immediate issue, I have found (and I have lost a lot - and regrown it - over the years). It can be caused by many things, including many drugs, especially antibiotics, but gluten does a number too.

Looking at your diet you do seem to consume a lot of nightshades (tomatoes, potatoes, peppers; I note you also eat corn. This would be the place to start with the nightshades first .

I would also eliminate totally the dairy and corn and after a couple of months add them back in one at a time and see what happens. This is really the only way you can judge your response to foods if a food diary is not making things clear for you.