Just Wondering

[nfred]

Hello,

I just wanted to get some opinions of people "in the know" on a few questions. A little background first. Last year I was feeling horrible, really tired, almost flu like and having strange neurological symptoms. Decreased sensation in my extremities that came and went. The doc was initially concerned about MS, but that was ruled out. After many tests, it was finally found that I have a B-12 deficiency. I have been on Cerfolin NAC for this and my energy levels have greatly improved along with the strange neuro symptoms. I also had a test for anemia at that time, but that was normal.

About 6 months ago at the suggestion of a friend I went to see a wellness doctor and was given a physical and tested for other vitamin deficiencies of which I have a few. I was also tested for hypothyroid and found to have a problem there as well, but didn't want to take the meds and have tried alternative solutions, none of which have worked yet.

Additionally I suffer from almost daily headaches, sometimes migraine like, but most are tolerable and stay at bay with a little Advil. I do NOT have any bowel symptoms (excessive gas, diarhea etc...), except a general upset stomach that I take Tums or Pepcid for on a daily basis.

One more thing on the symptom list is general aches and pains most, but not every day. Kind of vague I know.

I have felt like this for so long, it kind of seems normal at this point. But, the headaches are really beginning to bug me, not in their severity, but in the frequency. I am worried about taking so much Advil and don't want my kidney's to revolt.

The friend that suggested I see the wellness doctor mentioned Celiac's but I didn't really check with the doctor, just thinking she would dig and come up with something for me to take action on. However, that didn't happen and I would like to be more proactive about all of this.

So, here are my questions:

1. Do any of these symptoms sound like they could be attributed to Celiac's?

2. What about the headaches? Today I ate a piece of pizza and about 1 hour later had the uneasy stomach and a raging headache, which I still have Advil did not work today.

3. What tests should I ask for?

4. I am pretty small and have had difficulty gaining weight for a few years (weird because I thought hypothyroidism caused weight gain). I am 5'2" and weigh between 95 and 100 lbs. It fluctuates. However, I have always been small and come to think of it have always had headaches. Since 2nd grade. Anyway, is this something that you have since birth or does it suddenly manifest later in life? Until recently these symptoms didn't seem connected.

5. If this is in fact Celiac or a gluten intolerance, will a gluten free diet "cure" this and allow the intestines to improve over time?

Thanks in advance for your help and support.

[curlyfries]

Yes, it is possible you have celiac. The pizza is a good indication.....so are your vitamin deficiencies. Some people have issues as a baby, others don't present any symptoms until later in life. And headaches can most definitely be a symptom. If you decide to try going gluten free, you may see improvement in days, or it could take months. Everyone is different. You may be surprised at other health problems that will improve, also. I'll let someone else answer about the tests. I chose not to be tested. If you do want to get tested, you will need to continue eating gluten until then. If you are celiac/gluten intolerant, the gluten-free diet will heal the intestines, but there is no cheating!

[nasalady]

Welcome to the forum!

2. What about the headaches? Today I ate a piece of pizza and about 1 hour later had the uneasy stomach and a raging headache, which I still have Advil did not work today.

Yes, usually my first symptom when I've ingested gluten is a migraine headache, sometimes with vertigo. The gastric symptoms follow later on. But everybody is different; some people only have gastrointestinal symptoms, others have all sorts of neurological symptoms or even skin rashes (dermatitis herpatiformis).

3. What tests should I ask for?

Here is the list of blood tests I took to my doctor (got the list from this forum):

Total IgA - this measures your body's ability to make IgA

ttG-IgA - very specific to celiac disease and is an intestinal tissue antibody

EMA - IgA - same as above pretty much

AGA-IgA - antigliadin IgA antibodies

AGA-IgG - antigliadin IgG antibodies

Your doctor will probably want to do an intestinal biopsy also; this can help with the diagnosis as well as allowing him/her to "stage" the amount of damage that's been done to your intestines.

4. I am pretty small and have had difficulty gaining weight for a few years (weird because I thought hypothyroidism caused weight gain). I am 5'2" and weigh between 95 and 100 lbs. It fluctuates. However, I have always been small and come to think of it have always had headaches. Since 2nd grade. Anyway, is this something that you have since birth or does it suddenly manifest later in life? Until recently these symptoms didn't seem connected.

Difficulty in gaining weight is a classic celiac symptom.

5. If this is in fact Celiac or a gluten intolerance, will a gluten free diet "cure" this and allow the intestines to improve over time?

In general a gluten free diet should allow your intestines to heal and diminish or eliminate other symptoms, even allowing other autoimmune diseases to go into remission. But it can take weeks, months, or even years to feel completely "normal", from what others have said here in this forum. I've been gluten free for a month now, and I notice that several of my symptoms have gotten much better, while others have not improved at all (yet).

In any case, I hope you feel better soon!

JoAnn

[nfred]

Thanks so much for your replies. I will call my doc on Monday for an appt. I think this is all coming together now over the holidays because we are on vacation and I haven't really been able to enjoy myself. When I'm at home on a normal schedule, it's easy to coast along and just make it through the day because everyone is depending on you. 2 kids and a husband that travels. But, slowing down on vacation has really brought this to light for me. I've had to opt out of several activities because I've felt too bad to participate.

One other thing that I didn't mention in my original post, but am wondering about is my mention of headaches since 2nd grade. Just writing the post must have been somewhat cathartic, because it brought back a flood of unhappy memories. For instance, when I began experiencing the headaches, I would also spend hours in the bathroom with stomach cramps. ( I actually got paddled several times by a teacher who thought I was making it up and didn't believe I was really having issues. ) Any time I've thought about this part of my life I've chalked it up to "nerves". My parents were going through a divorce and I thought the stomach aches and headaches were stress induced. I remember having this condition for several years and not going on field trips or participating in family events because I was scared there wouldn't be a bathroom near. The weird thing is that I don't have the stomach distress any more. I don't really remember when that cleared up. I do still have the headaches though.

Thanks again for the replies. I feel like I may be on to something here.

PS Has anyone heard of the stomach issues spontaneously correcting themselves while other symptoms persist?

[lbd]

Your symptoms sound almost exactly like mine. Going gluten-free cleared up most of the migraines and eliminating most casein (dairy) products eliminated the rest. The other night at a party, I ate two chocolate candies that I assumed (dumb thing to do) were gluten-free. Turns out the fudgy filling was made with Oreo cookies! I woke up with my first migraine in 6 months and felt kind of blah for 3 days.

I also used Enterolab to investigate my genetics. I have DQ1 (linked to neuro type problems) and DQ2 (linked to celiac), so the potential was definitely there. Enterolab also found antibodies to gluten and casein in the stool sample, and evidence of malabsorption.

If I had known 40 years ago about gluten, I would have gladly given it up then to avoid the 40 years of migraines.

lbd

[lizard00]

I also had daily headaches. Not much worked for me though. I always considered myself to be a "headachey" person, but somewhere around a solid year to year and a half of having daily headaches, I realized that something could seriously be wrong. I did some experimenting, and actually found out about my celiac by accident. Either way, I get headaches now when I get glutened; it's the first sign. Not a migraine, but not far from it. My head pounds.

I also had a lot of stomach pain. It's usually pretty calm these days, but again, when I get glutened, nothing I eat sits well. My symptoms are mostly upper GI. Anyway, give it a try.

Hope your appointment goes well Monday. Sounds like you might be on to something.

[Jenny (AZ via TX)]

I also had headaches and migraines since I was a child. When my bloodwork was done I had an extremely low ferritin level (iron) and also low D3. Was diagnosed with celiac and later hypothyroid. Celiac has so many different symptoms and many people do not have the gastro symptoms. Many have the neuro symptoms. Since going gluten-free, I have very few headaches and have only had one or two migraines. My quality of life has improved so much!

I'm glad you're getting checked out.

[whistle]

"About 6 months ago at the suggestion of a friend I went to see a wellness doctor and was given a physical and tested for other vitamin deficiencies of which I have a few. I was also tested for hypothyroid and found to have a problem there as well, but didn't want to take the meds and have tried alternative solutions, none of which have worked yet."

[i don't know why my quote isn't in a box like the others. I thought I followed the instructions.]

Hi nfred, I'm not really "in the know" about celiac (I'm impatiently awaiting the results of my bloodtest) but I do know a few things about thyroid (I had my entire thyroid gland removed 23 years ago due to cancer).

I don't know what kind of meds the doctor suggested to you, or what kind of alternative solutions you've tried, but here's a bit of info:

If your hypothyroidism is caused by iodine-deficiency, then foods high in iodine might help. These include seafood, seaweed (kelp), and iodized salt. Sea salt does not have a high iodine content naturally, but apparently there are iodized brands that have come out. There are iodine supplements also. People who know more than me about celiac may be able to say whether or not celiac can cause iodine-deficiency. The reason iodine-deficiency can cause hypothyroidism is that iodine is a component of thyroid hormones.

If your hypothyroidism is not caused by iodine-deficiency, then the treatment is hormone replacement. There are various brands of synthetic thyroxine (T4) which are exactly the same chemical composition as the T4 your body produces. The non-synthetic option is desiccated pig thyroid gland. I don't call it "natural" because it's not natural for a human to take pig hormones. I take a synthetic called "Synthroid'. I'm personally not interested in trying the pig gland because you can't tell exactly how much hormone is in each grain, and I am sensitive to very tiny amounts. The pig gland also contains T3 and there are major disputes about whether T3 should be taken. (T3 is the active form. T4 is converted to T3 by the body as needed. I've read that taking T3 can cause the person to be hyperthyroid for part of the day, which is not good. The pig gland also contains a different ratio of T3-T4 than human glands.) That said, I have been to thyroid forums where some people say they've had more success with the desiccated gland than they did with the synthetic, so perhaps it's a matter of the individual. And there is a lot of debate going on about T3, but I don't want to complicate this post any more than I already have.

In reading about celiac lately, I've learned that celiacs have a higher likelihood of having autoimmune thyroid disorders such as Hashimoto's thyroiditis (& vice-versa...somebody correct me if I'm wrong). Hashimoto's is treated with hormone replacement. If you're taking hormones, it takes a while for them to build up (or decrease) in your system. When I change my dose, I get a blood-test about 3 months later.

Mainly, I wanted to make sure you knew that kelp and such are not alternatives to thyroxine. Kelp and other iodine-rich sources can only help with iodine-deficiency, and there are other causes of hypothyroidism. Both celiac disease and thyroid disease have a plethora of possible symptoms and some of the symptoms are the same. Thyroid symptoms are caused by thyroid hormone imbalance, which affects every system in your body. If your doctor is suggesting thyroid medication, it's likely thyroxine (levothyroxine sodium) and is the same chemical as what your thyroid gland produces. If you're diagnosed hypothyroid it means you don't have enough of this hormone in your system, and believe me, you need to have the right amount.

Also, Advil (ibuprofen) can be hard on the stomach, as is Aspirin (acetylsalicylic acid). I have a very acidic stomach and I can't take those, or I end up in a lot of pain. Is it possible for you to take Tylenol (acetaminophen) instead, or for a while to give your stomach a break from the Advil?