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Strange Symptoms Even For Celiac?

ali786

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ali786 Newbie
ali786
Posted

Hi everybody. I am very glad to have found this forum. I have been reading so many of your posts and they have been very informative. But so far I haven't found people with symptoms such as mine.

Its been more than six months since the problem started.

Current age 27- Do people get Celiac this late in age?

Lower back pain for 6 years, worse in the morning, and only goes away with excercise and since the D began I have been expereincing pain in my hips?

I have multiple subcutaneous lumps/bumps all over my back which I first noticed around the same time as D?

I decided to go gluten free and it was AWESOME, I felt so good, no more D, no more waking up at night feeling hungry...its been 4 weeks but a couple of days ago I got recurrence of D for 2 days even though being gluten free. So I have been off gluten-free diet for 3 days now BUT no D but I am feeling crappy!

I don't know if anyone has noticed this about themselves is but my tounge is swollen well it sork of looks like a strawberry with the tase buds being HUGE...I think it may have to do with vitamin deficiency.

I have one female cousin with Celiac, Fatehr with Rheumatoid, Uncle died of Lou-Gherig's...apparently rest of family is ok.

I have an appointment with the Doc this week.

Celiac SUCKS even if it turns out I don't have it.

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Lymetoo Contributor
Lymetoo
Posted

sounds like it COULD be vitamin deficiencies....but with your family history, I would check out Lyme disease as well. Many with Lyme were misdiagnosed with ALS or RA, among other misdiagnoses like FMS, CFS, etc.

Sounds like Gluten is a big factor, however. Make sure your diet is CLEAN.

CDFAMILY Rookie
CDFAMILY
Posted

Ali,

The bumps could be DH which is a skin form of Celiac Disease. Do they itch?

The swollen tongue with bumps could be a B12 deficiency. I had that all the time. I alsoI also would get the worst canker sores from biting my inner lips and tongue. I also had a burning tongue whenever I would eat salads....I thought everyone had that until I took B12 and went gluten-free.

Make sure when you see the doctor to ask for a B12 test and while he is at it ask for a homocysteine and Methylmalonic Acid test which will confirm the B12 deficiency if you happen to be taking some B12 but not enough to replenish if you are malabsorbing. Also, I would ask for a complete iron and ferritin test and check for low lymphocytes and low vitamin D.

Also, they may say your B12 is normal but anything under 500 is getting in the dangerous zone. I think the level is still around 220 which is in the major neurological problem area. I had double vision and vertigo at 346 and was not treated until I insisted on a recheck and had dropped to 206 in just 7 months. By then I had axonal neuropathy and many autonomic problems.

ali786 Newbie
ali786
Posted
  • Author

Ali,

The bumps could be DH which is a skin form of Celiac Disease. Do they itch?

Um I don't think its DH because these bumps are subcutaneous, meaning underneath my skin. But yea I have had a few canker sores too now that you mention it. Luckily so far no neourological symptoms are present.

So far no one has mentioned the AGE? I am 27 and my smptoms started 6 months ago...how about you guys?

CDFAMILY Rookie
CDFAMILY
Posted

Ali,

How did your doctors appt go?

Age 27 that is a wonderful age...my son age 25 was just diagnosed with very few symptoms and over weight.

I was diagosed last year...I will be 52 soon :o

My daughter was diagnosed at age 18

As you can see age does not make a difference for a diagnosis.

lpellegr Collaborator
lpellegr
Posted

I was diagnosed at age 45. I met a woman who was diagnosed at 80, after 8 years of trying to get a diagnosis for her symptoms. Yup, it can happen at any age, and either you had the symptoms all along and just didn't know what they were or thought it was something else and now they are finally bad enough to cause a problem (like anemia, vitamin deficiency, etc), or some illness triggered your immune system to target gluten and it's new. Either way, be religious with your diet! Your diet is your friend or your enemy for the rest of your life, so get used to it. Think of all those weird symptoms as your drill sergeant chewing you out when you screw up!

Sarah8793 Enthusiast
Sarah8793
Posted

I can't help much with the symptoms questions, but as far as age goes, I think it began when I was 31 but I didn't figure it out until this year and I am almost 37. There isn't any hard and fast rule about the age of onset, just generalities.

Sarah

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M-3 Gal Rookie
M-3 Gal
Posted

That sounds strange....I have not even been diagnosed yet.....all test have come back negative for anything so I go to see the gastro doctor who did my endoscopy next week and until then I have been going gluten and wheat free just to see and keeping a journal of what I eat and how I feel afterwards. My symptoms were back pain stomach pain and burning and strange feeling in throat...they thought I had acid reflux and have me on medication for that. So who knows. Anyway, with those symptons, please see the doctor and by the way, I am turning 39 in a couple weeks so I don't believe age has anything to do with it. However, I wanted to know if anybody knew anybody that got this problem after having braces put on????? This starting happening to me about a couple months after I had braces on.....I was not eating a lot because of the pain from the braces, so my diet was bad and I wondered if this brought on the problem with gluten. Anyway, just a guess.

Mayflowers Contributor
Mayflowers
Posted

My sister's husband has bumps under his skin and she took him to a neurologist. He has some kind of abnormal benign tumors growing along the nerves. They can be removed but she said they can grow back. He has them on his legs I think.

evie Rookie
evie
Posted
Hi everybody. I am very glad to have found this forum. I have been reading so many of your posts and they have been very informative. But so far I haven't found people with symptoms such as mine.

Its been more than six months since the problem started.

Current age 27- Do people get Celiac this late in age?

Celiac SUCKS even if it turns out I don't have it.

Ali: Any age is possible to be diagnosed with celiac disease!! :blink: with your family history does sound possible you could be a candidate for celiac too. the bumps under the skin may be fibromyalgia, are they sore bumps? i was diagnosed with FBS 15 years ago and in Feb. 06 found to have celiac disease. the FBS had gotten better, but is flaring uo again in my shoulders. never too late/\. but the gluten free diet is a blessing!! Otherwise I would feel a lot older than near 78. :):) Luck to you!! evie

lovegrov Collaborator
lovegrov
Posted

Age doesn't matter.

richard

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      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
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