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Help! So Many Symptoms, Gluten-Free Not Helping...


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11 replies to this topic

#1 lil'chefy

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Posted 04 February 2013 - 07:38 AM

So, I posted this post on someone else's topic, and I want it to get more attention than that, as my reply doesn't have its own title, and I could use some advice, suggestions. So I am sorry about the repeat, but here goes....

I have "had" celiac, via DH diagnosis for 23 years. I have taken Dapsone for 20 years (100mg.). I stopped the Dapsone maybe 1-2 years ago. I was on a gluten free diet for about a year, after discontinuing the dapsone. I am eating a clean regular gluten included diet right now, but considering going gluten free again. To date, I have not had a DH breakout in many years. I had a skin biopsy confirming DH done 3 or 4 times (years ago). Right now, I am struggling with the idea of going gluten-free again. I hate eating food that is in no way comparable. There really is nothing as delicious a a steaming loaf of homemade gluten derived bread, ya know? The fact that I have not broken out makes it very difficult for me to go on such a strict regimine. Now I will move on to my current symptoms, and maybe someone could help me understand why I am not breaking out, or what the relationship is for me. First, you should know, I have had the celiac panel--- It says I don't have celiac disease. I have had a blood test done for food allergies---It says I don't have any, accept for sesame, which I eat all the time, and have never had a reaction to. I have little faith in the blood allergy test. I have had an endoscopy done, no sign of celiac disease there either. When I was pregnant with my now 5 year old, she was not growing inside of me, not matter how much food I ate. I was gaining, but she wasn't. She was diagnosed with intrauterine growth restriction. I was eating gluten at the time. I did not make enough breast milk to nourish her. My next pregnancy, with my now 3 year old, was fine for him, but almost ruined my vascular system, which has never been the same since. I also did not produce enough breast milk to sustain my son.

Now I will list the health problems that I have been struggling with for a couple to a few years now (since my 3 year old was born). First off, I have stopped making ALL hormones, at 36 years old:-(. I am currently on bioidentical hormone therapy, but so far, that has yet to help me feel better. I have had saliva testing done and blood work done for my hormones. Both show that I am not even in menapause, I am not making ANY HORMONES. I have extreme adrenal fatigue. I have always had ADHD symptoms. I have pervasive, relatively new joint pain. Literally all of the sudden, my skin is ridiculously dry, and my skin is aging VERY rapidly. I am having massive female problems, but still cycling. I have been passing out, only twice, but still, I have a 5 year old and a 3 year old! Tests show that I am flirting with hypothyroidism, I test on the low side of normal. I have been having severe anxiety/ mood swings for a few years. I CANNOT lose weight, no matter what I do. I count calories, and run for exercise. I don't lose any weight, I just make my bones hurt and make my exhaustion profound. My feet hurt so badly, that I don't feel like I can walk correctly sometimes. I am in school and I nod off sometimes! That is so not like me. My blood pressure is so low, sometimes at the doctor's office, they don't want me to drive home. I take immaculate care of my teeth and my mouth, but to no avail (they are decaying at a rapid rate of speed, and my gums are so sore). I should also mention that I got crazy, they won't stop, nose bleeds when I was little, but was always only on the brink of being anemic. All these reasons and many others are why I decided to go gluten free once and for all November of last year. And so I did....... I got absolutely NO relief from any symptoms what so ever. It was very depressing for me. I thought I had finally nailed it...that silver bullet that so many doctors miss. They have run a lupus panel. I don't have that. I am SO tired of feeling like crap. If anyone has any info for me, it would be invaluable for me. I have an appointment with an endocrinologist later this month, but I am pretty pessimistic about the outcome.
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#2 nvsmom

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Posted 04 February 2013 - 09:49 AM

:( I think the only celiac (or Non-Celiac Gluten Intolerance - NCGI) symptom that you don't have is the stomach aches... You've had a tough road lately.

I think that if you you have DH, then you have celiac. Celiac disease does not always attack the gut (so a negative endoscopy would result), sometimes it goes after skin (DH), organs (besides skin), nerves and our brains. Gluten is the trigger of the attack. If you stop eating gluten (and pulling the trigger) the attacks will eventually slow and stop. If you have celiac, you need to eat gluten free... You are hurting yourself over and over. :(

You sound extremely hypothyroid too. If you aren't making hormones, then your thyroid won't be working and then your metabloism will slow to a crawl and basically stop. You need to have your thyroid checked ASAP. Your family doctor can do it for you so you don't have to wait a month.

Check your:
TSH (should be very close to a 1)
Free T4 and Free T3 (should be approximately in the 50-80% part of the normal reference range of your lab)
TPO Ab (should be nonexistant)

You better get your cortisol levels checked too. You need cortisol to live.

The anemia could be from low ferritin or low B12. D is another common low vitamin.

I feel for you. Many of your symptoms were mine a year ago. I passed out at soccer games while out with my three young boys, my hair was brittle and falling out, my skin was so dry it looked like scales on my legs and my fingers and feet are forever cracked and bleeding, my joint pain was so bad I could barely type or cut my kids' sanwiches. I'm quite a bit better now so there is hope. :) Best wishes.
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#3 lil'chefy

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Posted 04 February 2013 - 10:52 AM

:( I think the only celiac (or Non-Celiac Gluten Intolerance - NCGI) symptom that you don't have is the stomach aches... You've had a tough road lately.

I think that if you you have DH, then you have celiac. Celiac disease does not always attack the gut (so a negative endoscopy would result), sometimes it goes after skin (DH), organs (besides skin), nerves and our brains. Gluten is the trigger of the attack. If you stop eating gluten (and pulling the trigger) the attacks will eventually slow and stop. If you have celiac, you need to eat gluten free... You are hurting yourself over and over. :(

You sound extremely hypothyroid too. If you aren't making hormones, then your thyroid won't be working and then your metabloism will slow to a crawl and basically stop. You need to have your thyroid checked ASAP. Your family doctor can do it for you so you don't have to wait a month.

Check your:
TSH (should be very close to a 1)
Free T4 and Free T3 (should be approximately in the 50-80% part of the normal reference range of your lab)
TPO Ab (should be nonexistant)

You better get your cortisol levels checked too. You need cortisol to live.

The anemia could be from low ferritin or low B12. D is another common low vitamin.

I feel for you. Many of your symptoms were mine a year ago. I passed out at soccer games while out with my three young boys, my hair was brittle and falling out, my skin was so dry it looked like scales on my legs and my fingers and feet are forever cracked and bleeding, my joint pain was so bad I could barely type or cut my kids' sanwiches. I'm quite a bit better now so there is hope. :) Best wishes.

Shouldn't I have started to feel better on the Gluten-Free diet. I did it religiously for 13 mos. No change:-(
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#4 Takala

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Posted 04 February 2013 - 12:07 PM

Shouldn't I have started to feel better on the Gluten-Free diet. I did it religiously for 13 mos. No change:-(


Not if it is your thyroid gland which is messed up. Eating gluten when you should not, because of celiac, causes an all over the body auto immune reaction which does not discriminate as to what part of the body it is going to attack next. You want a visible skin rash to come back to prove to yourself that gluten is a problem. If only we could order up a rash when we need one, it doesn't work that way. <_< The rest of your hormone reproductive system is trying to tell you something. The regular test for thyroid levels will NOT show an auto immune thyroid disease. Doctors can run these tests and announce that you are fine and normal, when in reality, you are not, because the thyroid gland under auto immune attack throws out lots of hormones in response, before it craters and fails. Re -read what nvsmom wrote.

TSH (should be very close to a 1)
Free T4 and Free T3 (should be approximately in the 50-80% part of the normal reference range of your lab)
TPO Ab (should be nonexistant)


TPO Ab Test - TPO= Thyroid Peroxidase Antibody, Ab= Antithyroglobulin measures antibody protein. This is the auto immune antibody test for thyroid disease. Your body should not be making antibodies against itself or the thyroid gland. Docs frequently only test TSH levels unless you tell them you must have this test. TSH tests will not show this. If you've had celiac or DH, that is another reason for them to do this, because the one disease can go along with, and precede, the other.

list of thyroid tests below, I'm not endorsing this site, just that they write it clearly. Also be aware now that the Big Pharma companies are doing us no favors and we have to check all medications for gluten, even if these medications are to treat a celiac related or thyroid related disease.

http://www.stoptheth...com/lab-values/



You should make sure that anything, including supplements and medications, that you take is gluten free on a gluten free diet.
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#5 cavernio

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Posted 04 February 2013 - 12:36 PM

So many things.
I have dx'd celiac disese and I've been gluten-free for almost 7 months. Not, it's not 13 months, but I still feel like crap, but I'm not about to order a regular pizza with cheese. The longer you eat gluten with a gluten problem, the longer it's going to take you to heal. It's taken you 23 years to get the point that you don't make hormones anymore, why would you expect them to be fixed in a mere 13 months?
Besides the thyroid test, you could also be having immune reactions that aren't allergies per se to other foods. Dairy, soy, corn all come to mind immediately. Go on a whole foods diet. No processed or packaged anything and see if it helps.

As for vitamin levels, anemic for you might not be anemic for me or clinically anemia. Ideal vitamin levels are based on statistics so even if they could somehow know everyone's exact minimal level of a nutrient (which they can't), doesn't mean YOU won't be anemic even if your levels are in a perfectly healthy range.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#6 lil'chefy

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Posted 04 February 2013 - 12:39 PM

:( I think the only celiac (or Non-Celiac Gluten Intolerance - NCGI) symptom that you don't have is the stomach aches... You've had a tough road lately.

I think that if you you have DH, then you have celiac. Celiac disease does not always attack the gut (so a negative endoscopy would result), sometimes it goes after skin (DH), organs (besides skin), nerves and our brains. Gluten is the trigger of the attack. If you stop eating gluten (and pulling the trigger) the attacks will eventually slow and stop. If you have celiac, you need to eat gluten free... You are hurting yourself over and over. :(

You sound extremely hypothyroid too. If you aren't making hormones, then your thyroid won't be working and then your metabloism will slow to a crawl and basically stop. You need to have your thyroid checked ASAP. Your family doctor can do it for you so you don't have to wait a month.

Check your:
TSH (should be very close to a 1)
Free T4 and Free T3 (should be approximately in the 50-80% part of the normal reference range of your lab)
TPO Ab (should be nonexistant)

You better get your cortisol levels checked too. You need cortisol to live.

The anemia could be from low ferritin or low B12. D is another common low vitamin.

I feel for you. Many of your symptoms were mine a year ago. I passed out at soccer games while out with my three young boys, my hair was brittle and falling out, my skin was so dry it looked like scales on my legs and my fingers and feet are forever cracked and bleeding, my joint pain was so bad I could barely type or cut my kids' sanwiches. I'm quite a bit better now so there is hope. :) Best wishes.

I should mention that I was deficient in Vit D, and ave been taking 5,000 IU's a day for 5 months now. I take a B-12 folate supplement, in addition to a MV. I have had my cortisol levels checked and they are dangerously low, I have been told. I can not however get any Drs. to take it seriously, that is what I am hoping for with the endocrinologist. As for the thyroid hormones, I had them tested, and they are on the low side of normal, so I am taking Thyrofem, I take Adren-all for my low cortisaol levels.
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#7 lil'chefy

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Posted 04 February 2013 - 12:41 PM

So many things.
I have dx'd celiac disese and I've been gluten-free for almost 7 months. Not, it's not 13 months, but I still feel like crap, but I'm not about to order a regular pizza with cheese. The longer you eat gluten with a gluten problem, the longer it's going to take you to heal. It's taken you 23 years to get the point that you don't make hormones anymore, why would you expect them to be fixed in a mere 13 months?
Besides the thyroid test, you could also be having immune reactions that aren't allergies per se to other foods. Dairy, soy, corn all come to mind immediately. Go on a whole foods diet. No processed or packaged anything and see if it helps.

As for vitamin levels, anemic for you might not be anemic for me or clinically anemia. Ideal vitamin levels are based on statistics so even if they could somehow know everyone's exact minimal level of a nutrient (which they can't), doesn't mean YOU won't be anemic even if your levels are in a perfectly healthy range.

I actually do a whole foods diet and little to no dairy, it hurts my stomach
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#8 shadowicewolf

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Posted 04 February 2013 - 01:32 PM

Have you tried removing other possible issues (corn, soy, casin)?
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#9 Takala

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Posted 04 February 2013 - 02:40 PM

As for the thyroid hormones, I had them tested, and they are on the low side of normal, so I am taking Thyrofem, I take Adren-all for my low cortisaol levels.


"Thyrofem" is a vitamin and herbal over the counter supplement, NOT medication for thyroid disease for low hormone levels, and will not treat that. "Adren- all" is an herbal supplement containing rhodiola, ginseng, schizandra, and licorice root. All of these supplements can have side effects, especially heart fluttering, nausea, and sleeplessness.
http://www.livestron...al-supplements/
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#10 pricklypear1971

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Posted 04 February 2013 - 03:19 PM

I responded to your post on the other post... so look there.

But I do want to say this. You need some super duper supplements. I was kind of wishy washy on if the brand, etc. would make a difference....and my new ND prescribes some specific ones that do make a difference. And I had taken some of the "good ones". The probiotic she put me on is some amazing stuff.

You don't need an rx to buy otc gluten-free supplements like vitd, multivitamin, etc. Just keep them "clean" and free of all the souped up added herbal stuff. Country Life is inexpensive and has a good gluten-free reputation.

And Takala is right, you need prescription strength thyroid medication. And fast, from the sounds of things.

Healing from adrenal problems is a mess. I know. I've been doing it from a year and a half. I'm just now approaching "normal", most days. And that's "most days".
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#11 nvsmom

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Posted 05 February 2013 - 09:43 AM

On the topic of supplements, try taking B12 and D sublingually for better absorption. It could help.

Going gluten-free only helped my stomach aches, bloating and headaches. It may be helping my joint pain (it's improved over the last month) but it's too early to tell (at 7 months gluten-free). All of my other symptoms seems to be thyroid related. Metabolism controls a LOT so don't count it out.

If your cortisol is dangerously low, you should see another doctor or consider going to emergency. Adrenal problems, like Addison's, can be life threatening.

Stay gluten-free and take care.
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#12 GFinDC

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Posted 05 February 2013 - 06:30 PM

Hi LC,

You have listed quite a few serious health issues. Not just for yourself but also for your children. You also listed one known serious health condition, celiac disease. The one known health condition has one known treatment, the gluten-free diet. The drug you used to get-by with DH (while still eating gluten) also has serious side affects. People with celiac disease who stay on gluten get sick, sometimes very, very sick. Sometimes they develop other auto-immune diseases in addition to celiac disease. That's bad. You have an easy fix to your celiac disease problem, stop eating gluten. That's one good thing you can do for yourself that may start turning things around. But it may not fix everything that is wrong. Damage to your body is not fixed like putting a new tire on a car. It takes time for your body to repair itself and sometimes it just can't be done. Dapsone isn't a cure for celiac disease. There is no cure for celiac disease.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul


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