Long Story, I Need Help From The Experts.

[Jentu]

So a few months ago I decided that something I was eating was making me sick. (Achy joints, bloating, anxiety, mood swings, cravings, fatigue... all the good stuff.) For a period of about a week I cut out all dairy and wheat as I saw them as the two main suspects. My cabinets were cleaned out, my pans scrubbed, all my husband's wheat-based junk was quarantined, and ingredients lists were checked and rechecked.

I'll tell you, I felt GREAT. I wasn't tired. My house ran like clockwork. I was patient and relaxed. My joints still hurt a little, but it didn't seem quite so bad and after all it had only been a week. The experiment seemed to be a success, that is until day 7.

A week into my dairy free/ wheat free diet, I get the WORST headache that I've ever had. It was on the left side of my head, and lasted all. day. long. I decided that it was due to my new diet and, being the sissy that I am, I stuffed myself full of milk and bread trying to make it go away. My first headache did go away, but from that time on I had one headache after another. Some would last all day, some would last moments, and they happened all over my head. Even my neck hurt. Then the rest of my body started hurting worse. All over.

From that time on I left the wheat and dairy in my diet, just to be clear.

When I finally made it into the Dr's after about a month of this, I told him about the wheat/dairy experiment. He told me that because I was eating them again that wasn't my problem and they didn't sound like migraines. I was referred to a neurologist. I let him know about the experiment as well, but he didn't say much aside from "You would have had diarrhea if that was your problem."

His unofficial diagnosis: tension headaches. The rest of my pain sounds like fibromyalgia, he says. I'm still nervous. I freaking hurt ALL THE TIME. I've reasoned that no one can be in as much pain as I've been in and not have something seriously wrong with them. Oh, and for the last two or three weeks I've been consistently gassy. Is there anything that isn't wrong with me right now?

So now I'm trying to get scheduled for a CAT scan and I have another neuro appointment in about a week. I just don't know. How can all of this be unrelated to me taking dairy and wheat out? Is it possible that I have an allergy to one of them, triggered a withdrawal migraine and then have been hurting due to my body's readjustment to the allergen? My doctors don't seem to think so, but I just can't help but wonder. Since that first bad headache, the pain in my head has been gradually fading out, but it's still not completely gone.

As of today I'm dairy and wheat free. I figure if it triggers more headaches, that has to be the problem, right?

[Ursa Major]

Is it possible that I have an allergy to one of them, triggered a withdrawal migraine and then have been hurting due to my body's readjustment to the allergen?

Yes, that is exactly what I think happened. And I believe all the doctors are wrong and don't know what they are talking about. Mind you, celiac disease isn't an allergy (and neither is a dairy intolerance) but rather an autoimmune disease.

If you want an official celiac disease diagnosis, don't stop eating gluten foods just yet. See your family doctor and ask to have the blood tests for celiac disease done. And if you want to have a biopsy by a GI done, you need to stay on gluten until after that, too. Because going back to gluten after eliminating it for a time will make you really sick, and it is not a good idea (doctors, in their ignorance, 'order' people to do that gluten challenge all the time).

Then, after the tests are done, go back to eliminating the offending foods. And don't just eliminate wheat, but all gluten grains, which are wheat (all varieties), rye, barley and triticale (which is a hybrid of wheat and rye), as well as oats, as those are usually contaminated with wheat here in North America.

On the other hand, if you don't care about an official diagnosis, just eliminate gluten and dairy and get well. You can still get testing done with Open Original Shared Link, as the test results will be accurate for up to a year of going gluten-free.

[Jentu]

Whew. Then I'm not crazy?

I'm not really worried about an official diagnosis. I just want to feel better! I'm going to be moving in less than two weeks and I'm now facing the possibility of not being able to fit in my CAT scan before my neuro appointment. Really it just seems like these guys are taking a couple wild stabs in the dark when it comes to what's going on with me.

Thank you!

[Ursa Major]

Really, if I was you, I would just cancel the CAT scan and neuro appointments, as I think they'll be useless. You're right, they are just making wild guesses and aren't listening to you at all. They appear to have the all-so-common 'God complex', like so many doctors. Ugh, who needs them!

[hafadai43]

I know exactly how you feel. I have headaches all the time too, although I have celiac disease and have been gluten-free since 2003. I'm only 22 and have felt like a total guinea pig the past few months as the doctors do test after test on me to eliminate certain things. So much of my money is being wasted on these tests and procedures that don't turn up anything. I have constant bloating and most of the time irregular bowel movements. I don't have any gluten contamination, so that's not it. First my family Dr. said it's not IBS because the bloating does not go away after a BM. Then the gastroenterologist that did my colonoscopy said that's not necessarily true. I just could have not totally emptied my colon. So....what in the world am I supposed to think and believe from these people? I suggested allergen testing for at least soy, dairy, corn...the common stuff....but my family Dr. said the tests "are expensive and inconclusive". She suggested an "elimination diet" instead. Well...I've tried it and I can't tell a difference no matter what I eliminate...I could be so messed up inside that taking it out for a little while wouldn't help. Who knows. So like you, I have felt like I'm on a wild goose chase with Dr.'s that may not really be listening to me.

I'm so sorry you are struggling...hang in there and try to keep hope that you will figure it out. I know it's tough....but we've gotta hang onto something don't we?

[Jentu]

Thank you, hafadai. I hope you get the answer you're looking for soon.

[mtraezme]

Have you added anything else into your diet? I was feeling great off of wheat and then got heinously bad headaches. I realized that I was adding a little packet of stevia to my cup of tea at night. I had used it before, but I think because my gut was so messed up it didn't get absorbed or something. When I cut out the wheat and started absorbing things more, I started to get headaches.

I don't know if that helps you, but it was an experience that I had that might help you figure out what's triggering things for you.

[mftnchn]

Jentu,

Hello and welcome. I think it is really important to check for celiac. The blood tests (someone just posted info on this forum on which labs are most reliable for testing), be sure you get all 5 tests. Even with negative blood tests some are positive with biopsy. You have to have fairly advanced damage for these to show up as positive.

Enterolab is the next option, more sensitive but doesn't diagnose celiac.

Beyond that, there could be other issues going on. Other food sensitivies you have already thought of. For another example, read the lyme disease thread on this forum for the long symptom list. There are a lot of similarities between lyme and celiac.

I too was feeling pretty okay until I went gluten-free, and that triggered lots and lots of symptoms. I am not sure why and don't have all the answers but have stayed GFCFSF for six months. There is progress, but slow. For me it was like my system "woke up." My theory is that after eating gluten for so long my autoimmune system had become very depressed, and my intestines had very slow motility. This has made it hard to get rid of toxins, and that has undermined my ability to overcome lyme disease. My lyme disease recurred 1 month after going gluten-free.

Another person with lyme disease here on the forum was sensitive to gluten and casein for a long time, but after treating for lyme is now able to tolerate all of this with no problem. The lyme attacked her intestine, I guess.

[CarlaB]

Beyond that, there could be other issues going on. Other food sensitivies you have already thought of. For another example, read the lyme disease thread on this forum for the long symptom list. There are a lot of similarities between lyme and celiac.

Another person with lyme disease here on the forum was sensitive to gluten and casein for a long time, but after treating for lyme is now able to tolerate all of this with no problem. The lyme attacked her intestine, I guess.

I was going to say the same thing .... here's the link to the thread. Open Original Shared Link

I'm the one who was sensitive for a long time. I was casein-free for six months and gluten-free for two years. Now my diet includes everything with no issues whatsoever.

I was negative for celiac disease, but got sick of even a crumb of gluten .... ended up being sensitivities from the Lyme ... and it's not uncommon.

[Jentu]

Doesn't lyme disease require a tick bite? I haven't been bit since my childhood.

[mommida]

Next time you get a headache try GLUTEN FREE SUBLINGUAL VITAMIN B SUPPLEMENT WITH WATER THAT HAS ADDED CALCIUM AND MAGNESIUM. (i.e. Smartwater or Dasani) The limited diet may have left you deprived of vitamins and nutrients.

Keep a food journal to see if you have a sensitivity to ANOTHER food item.

One of the first times a had a cross contamination experience on the gluten free diet I had a major headache with projectile vomiting.

If you are going for an official diagnoses you will need to stay on a "normal" diet and hope there is enough damage to be detected by the tests.

L.

[CarlaB]

Doesn't lyme disease require a tick bite? I haven't been bit since my childhood.

Me either ....

50% of people with Lyme Disease never saw the tick that bit them ... since you do know you've had a tick bite, it would make me more suspicious of Lyme. Lyme can be dormant for a long time and remain relatively symptomless.

[Jentu]

I've had like a hundred of them lol

When we were kids we'd get them all the time and just pull them right out.

I've got an appointment for tomorrow 8am and I'm going to ask about getting tested.

How long will it take to get the results back? In the event that I turn up positive, should my two children be tested as well?

[CarlaB]

Jentu, the Lyme Disease thread has critical information regarding testing and the controversy behind diagnosis and treatment of Lyme Disease. Be prepared for your doctor to completely dismiss the possibility and give you inadequate testing .... that's why people like you and I can go our whole lives thinking all those tick bites were not big deal .... then we end up with an "undiagnoseable" chronic illness.

There is also a symptom list on the thread .... if your children show symptoms, they should be tested. It can be passed congenitally.

[Jentu]

Thanks for all the help, Carla. How do you feel now? Can you expect a complete recovery after treatment?

[CarlaB]

My treatment is long-term since I've had it so long. I can look back and see that I had symptoms as far back as high school .... I've had four disabling flare ups where I couldn't work for a period of months ... this time I've been sick four years.

My current flare is when I finally got diagnosed. I have been in treatment for 10 months and am looking at at least another year.

My doctor asks for progress by saying how I feel on a percentage scale ... 0 being dead, 100 being fine for my age .... in Jan. I said 15%. Now I say 85% on a good day, down to 40-50% on a bad day. I am becoming more functional all the time.

I expect, and so does my doctor, full remission of symptoms. At this point they can't use the word "cure" as the bacteria is stealth and there's no way to get 100% of it. So I see a holistic Lyme specialist who also rebuilds my immune system in addition to prescribing abx.

[Jentu]

Okay, I got tested and the results should be back by mid-next week. Eh.

[CarlaB]

That was quick! What test did they run? It needs to be the Western Blot ... and it should be from a specialty lab as they are more accurate (they take two weeks, so I'm guessing it's not a specialty lab) ... labcorp and quest leave out two of the most important bands because of an immunization that was only used for a short time before it was taken off the market.

The ELISA test is only 50% accurate.

So, if you get a positive test, you have an answer, if it's negative, remember there are a lot of false negatives.

Good luck!

[Jentu]

Yeah, I just called yesterday after you suggested lyme and asked to see the doctor about it so I'm pretty happy that I got in in less than 24 hours. It's a military treatment facility so I'm sure that it's a cheapo test and they don't have the flexibility of a civilian doctor's office would. They said they send them off to San Antonio. I'm feeling really good now that I'm gluten-free/ and milk free, but if I get a negative back and still have unresolved issues, I'll probably be wiling to fork out the cash for another screening. When I move here in a week I'll be back in the care of a civilian doctor, so I'll take it up with them at that point.

ETA I think what they do is a "titer."

[hathor]

When I finally made it into the Dr's after about a month of this, I told him about the wheat/dairy experiment. He told me that because I was eating them again that wasn't my problem and they didn't sound like migraines. I was referred to a neurologist. I let him know about the experiment as well, but he didn't say much aside from "You would have had diarrhea if that was your problem."

Well, no. Plenty of us don't get diarrhea. (And since when is a neurologist an expert on food intolerances?) You had a pretty clear response to diet change. So it seems clear to me that diet is involved.

If you added soy to make up for the absent diary, that could be your problem right there.

Also, both gluten and casein can trigger withdrawal symptoms. There is nothing about either of them that your body REQUIRES long term. Here is an article that discusses the withdrawal phenomenon. I find it interesting that the first story told is of someone who at first felt better, as you did, then experienced withdrawal. Open Original Shared Link

[Nancym]

Really it just seems like these guys are taking a couple wild stabs in the dark when it comes to what's going on with me.

that pretty much sums up the doctor business.

Just because you sound a bit like me let me share some good news with you. It took 2+ years but I am off my medications for an autoimmune arthritis that was happening in all my joints and many tendons. I also had muscle spasms and IBS, post nasal drip, infrequent migraines, ezcema, and various other things.

The cure was adopting a paleo diet. No dairy, no grains. Basically meat, veggies, fruits, nuts (although I think nuts are an issue too), eggs, coconut.

I also started supplementing with Vit. D3 and I think that might have helped me too.

[Jentu]

Thank you hathor, I'll definitely be looking over this guy's blog. I alternate between feeling like an idiot for thinking I know better than a guy with a medical degree and then feeling like an idiot for not trusting (what I think) is some pretty clear evidence. What really struck me in one of this Dr's posts is that the shaky nervousness described in withdrawals is what's I've been feeling for the past two or three days. =/

I did add soy, but it's not something that was new to my diet. (Obviously I had suddenly been getting more though.) I've tried to keep it to a minimum this time around because I want to know exactly what is affecting me and how.

Nancy, you and I share a lot of symptoms. xD

I'll be looking into the paleo diet as well. I think it may be just what I need.