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Undiagnosed With Questions
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Hello everyone,

I've had amenorrhea (absence of menstrual cycles) since I was 12, and I've been taking birth-control pills to regulate my periods since 16, as the doctor's conclusion was that I had a hormonal imbalance. I'm 33 now.

I've always been constipated (sometimes diarrhea but not as often as constipation) and always overweight, even as a little child. I never had any abdominal problems other than the constipation and bloating, but I never felt any pain.

I went to doctors so many times complaining about being depressed, suffered severe mood-swings & anxiety, tired and constipated, and I even told them that I ate healthy and exercised, but they always smirked at me and linked my problems to my weight. They told me that nothing was wrong with me, to go home and start eating vegetables and cut down on pasta. A gynecologist even told me that there was no need for me to get periods at all, so even the birth-control treatment was needless!

I started reading a lot about hormonal conditions because I wasn't satisfied with the treatments I got from doctors, and I falsely came to the conclusion that I had PMDD (advanced state of PMS), so I went to yet another gynecologist and explained all my issues to him. All he did was prescribe a different type of birth-control pill and gave me anti-depressants, which only made things worse.

I however read on a PMDD website that a good natural treatment for PMDD was to cut gluten, sugar, lactose, salt, caffeine and salt from my diet, so I did that. That's when I started feeling better, but still not all the time (since I had no clue I had to be 100% strict! I still ate processed foods and ready-made sauces which I had no clue contained gluten).

As I was visiting family this summer, they all tried talking me out of gluten-free eating because they felt bad that I couldn't enjoy all that food they were eating. They told me it was all bullshit and silly because no doctor actually told me to stop eating gluten. I was almost convinced since I wasn't really feeling so good anyway, but I went online a see if any websites confirmed it was all a myth.

That's when I found that amenorrhea is a symptom of celiac disease. I always thought that my digestive issues were caused by my hormonal imbalance, and not the other way around. I dismissed celiac disease before because the doctors told me I had a hormonal imbalance. I didn't know doctors could be so stupid.

I also discovered that my gluten-free diet wasn't effective while reading about celiac disease. I had no clue I was still eating so much "hidden" gluten.

Discovering I might have celiac disease made so much sense, because whenever I exercised, I would feel weaker after.. and people are supposed to feel stronger after working out, but I would have such awful muscle weakness (not pain) that pushing on the bicycle paddle was harder than the previous day, until it would be too difficult, so I'd stop working out until the next week (where my strength would be back). It also made sense because I don't have hair or acne on my face or any faulty reproductive features which could be caused by hormonal problems.

Now I'm watching every last ingredient if I buy any ready-made good or sauce, and I even try to avoid anything in a jar or a can. I'm sticking to only fresh stuff and keeping check on all the hidden gluten in flavorings and whatever. Even my weight has been going down, but I have a few questions that I'm hoping you guys can help me with, since there is no way I'm going to a god-forsaken doctor anymore.

1. How do I know what kind of supplements I need? My teeth are slightly transparent and decayed but I don't have any serious bone or dental problems. My nails tend to bend even when they're short.

2. I sometimes get dandruff and itchy scalp. Will this be treated by dieting? I'm currently using VICHY shampoo which I hope is gluten-free (they're not answering my emails).

3. Since I don't get any immediate symptoms (like cramps or sore throat) after eating gluten, how do I know I've made a mistake before it's too late? All I feel is constipation, bloating and anxiety.

Thank you anyone who reads this. I appreciate any help and pointers, specially since I don't know anyone else who knows about this. My entire family cares less about ingesting gluten even though I've told them it's hereditary. Not a single doctor I've met ever thought twice about helping me since to them being overweight pretty much sums it all up for them. My weight has been going down on it's and I pretty much eat the same amounts as I always have.

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Just to address the chewing gum and ketchup issue. I don't chew gum but I haven't heard of any with gluten. I would think sugar free gum would be OK. In the US, i haven't seen any ketchup with gluten.

Have you had yourself tested for anemia, iron, ferritin, B12, calcium, magnesium, vitamin D? Severe vitamin deficiencies are a result of the intestinal damage. You can't absorb the nutrients.

I assume through all this they are watching your thyroid?

Not every pain or problem is related directly or indirectly to gluten. Your back might just hurt because you lifted something wrong. Alot of things, like bad fingernails, can be related to the vitamin deficiencies caused by celiac. They can also be related to thyroid, dry air, etc.

Make sure you are not deficient and supplement what you are lacking.

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Just to address the chewing gum and ketchup issue. I don't chew gum but I haven't heard of any with gluten. I would think sugar free gum would be OK. In the US, i haven't seen any ketchup with gluten.

Have you had yourself tested for anemia, iron, ferritin, B12, calcium, magnesium, vitamin D? Severe vitamin deficiencies are a result of the intestinal damage. You can't absorb the nutrients.

I assume through all this they are watching your thyroid?

Not every pain or problem is related directly or indirectly to gluten. Your back might just hurt because you lifted something wrong. Alot of things, like bad fingernails, can be related to the vitamin deficiencies caused by celiac. They can also be related to thyroid, dry air, etc.

Make sure you are not deficient and supplement what you are lacking.

Thanks kareng. I'll get myself tested when I get back to Sweden. I'm currently on a trip in the middle-east. The chewing-gum and ketchup are local brands. The gum contained dexterin and the ketchup some type of flavoring. I did a thyroid check a few years ago because I was gaining unexplained weight (which turned out to be due the anti-depressant paroxatin). They said my thyroid was not under-active.. but I'm not sure if that has anything to do with celiac disease symptoms.

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Thanks kareng. I'll get myself tested when I get back to Sweden. I'm currently on a trip in the middle-east. The chewing-gum and ketchup are local brands. The gum contained dexterin and the ketchup some type of flavoring. I did a thyroid check a few years ago because I was gaining unexplained weight (which turned out to be due the anti-depressant paroxatin). They said my thyroid was not under-active.. but I'm not sure if that has anything to do with celiac disease symptoms.

Who knows in the middle-east? I didn't even know they had ketchup!

IN the US. dextrin and flavorings are considered safe.

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I've been reading some other posts and some new questioned have come up! I would appreciate your input and advice.

Can Dermatitis Herpetiformis appear on a single finger? I was getting a rash where the skin broke and got flaky together with tiny blisters. It both itched and burns (specially at night). I went to a doctor and he told me it was allergies from dish soap, and gave me cortisone cream for it. The rash went away when I started using gloves when washing dishes, and the cream was quite effective if it showed up again. This rash only appears on my right middle finger and the back of my left hand but milder. A few weeks ago I got a red flaky patch on the bikini line as well but it didn't have blisters. It was very itchy and a little inflamed though. They've both gone now that I've gotten off gluten 100%. I'm starting to think it might be a mistake not to get myself diagnosed now.

I'm trying to figure out which one of my parents has celiac, even though they're not taking me seriously. My mother is very short and skinny, can suffer from constipation, and has a red rash patch (small and flaky but no blisters) on both her knees. She doesn't have diabetes and I don't know about her thyroid.

My dad on the other hand has diabetes, thyroid problems, constipation, and suffers severe mood swings like me (I used to think he was bipolar because he'd be calm for months then become overactive and irritable the next months). But he's quite tall and his bone structure is wide. Is it possible that both my parents have celiac?

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Hello forum dwellers,

I've sadly not gotten any responses to my questions, but I know that the forum is large and it's hard to give every last poster your attention. I've luckily read around and found answers to most of my questions as well so no worries:-)

Nevertheless I'm still having stomach aches. I just never had them before, or maybe I just didn't notice them, or maybe they're just placebo.. I don't know, but I've been getting them often since getting off the gluten. The constipation is gone on it's own for the first time in my life but I don't know why I'm getting stomach aches. Like when I sit or lie down on it, it hurts. I didn't stop the lactose yet because I'm on trip in the middle east and the yogurt dishes or dishes that are eaten with yogurt are made really often. Could the lactose be causing the ache? My stools are kindof loose as well (sorry for the grossness). Will continuing to eat lactose prohibit my intestines from healing as well? I'm going home in a week.

I'm also wondering why getting diagnosed is very important.

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Hi Dani

Doctors like getting you diagnosed as they think that celiacs need to be very strict about the diet to avoid further health problems. They currently think that people with non-celiac gluten sensitivity may not need to be quite as strict, and may even have a level of tolerance to ingesting small amounts of gluten. However I haven't managed to find any research to back this up, and many of us think that doctors are simply missing many celiac cases because of problems with the testing (or simply not testing when they ought to). Given the wide range of symptoms experienced by diagnosed celiacs (from near-death to completely silent)you could argue that if you have observed any form of gluten sensitivity, strict avoidance is less risky.

A formal diagnosis also helps other family members get tested, as medical guidelines encourage the testing of first degree relatives. Celiac disease is strongly heritable, and one day you may need to have your children tested. A diagnosis also helps to stop other family members thinking you are simply odd to avoid gluten for no reason validated by a doctor!

As for the ongoing stomach aches etc - well, it just takes time to heal. Until you do, it may continue to hurt for a while.

Continuing to consume lactose won't help you heal. Lactase to digest the lactose is produced in the tips of the villi. If these are damaged by celiac, you won't be able to digest it. I don't know if consuming it will actually set you back in healing, but I personally feel it is likely, albeit not the same extent as gluten ingestion. I tried some hard cheese for the first time yesterday (after 5 months gluten free), and it just gave me stomach ache, gurgling and bloating. Not as bad as a gluten reaction, but not helpful either. I'm going to continue to avoid it for a bit longer. I agree it is tough for you though, if you are trying to eat while travelling, and dairy is in most of the local food. I hope you enjoy your trip despite your discomfort. It is a fascinating area of the world.

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I was lactose intolerant for milk, ice cream, cream and frozen yogurt (not really yogurt), but was able to tolerate yogurt, cheese and sour cream without any problem. This is because these products have cultures and enzymes which digest the lactose for you and are mostly lactose free. I believe it is probably not worth spoiling your trip over not consuming a little yogurt - you can find out whether or not it bothers you when you get home, but do avoid the full lactose products like milk, etc.

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Dani, watch out for ketchup in the MIddle East. Only eat it if it is from a packet. They add water and other stuff to "stretch" the Ketchup in my experience. It tastes bad when they do this. We follow this rule anywhere outside the US to be honest but I really noticed the weird ketchup in the Middle East.

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Dani, watch out for ketchup in the MIddle East. Only eat it if it is from a packet. They add water and other stuff to "stretch" the Ketchup in my experience. It tastes bad when they do this. We follow this rule anywhere outside the US to be honest but I really noticed the weird ketchup in the Middle East.

Yeah I don't eat it anymore. Thanks

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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