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Self Diagnosis?

monimoni

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monimoni Newbie
monimoni
Posted
<_< Hi! My name is Monica. I came across this site last night while doing a google search. All of the symptoms I have seem to point straight to Celiac. For approximately 10 years, off and on, I have been suffering from wicked stomach pains resulting in extreme bloating. Whether I have just eaten or not, my stomach will hurt so bad and swell to the point that it is hard to stand. The pain is usually in between my ribcage at the top of my stomach, and sometimes throughout making it hard to locate the pain. I do not eat any "meat" (red meat, pork, or any type of poultry) and haven't for 8 1/2 years. I try to get my protein from other sources such as certain seafood, seitan, shakes, etc. I love to cook and overall would consider myself a healthy, well-balanced eater. I have tried to cleanse my body through detoxing on raw fruits and vegetables, alternating with days of water/all natural juice fasts. I notice no stomach pain during times like this, still there are other areas of discomfort. Plain and simple....I always wake up tired no matter well I've slept, I get headaches more often than normal, my legs feel very tired, and without sounding vain...I CANNOT STAND THE DARK CIRCLES under my eyes!! I have no health insurance as of now, so I cannot get immediate answers. I have seen a doctor recently through CAMCARE (healthcare provided in South Jersey for low income) but felt as if I gave more information that he did. He said because I've had no problem maintaining my weight, most likely it's not Celiac. I don't know what to think and I am tired of feeling bad and sounding like an old woman. I'm only 27, oozing with positivity and have loads of energy inside. What is my problem?! My next plan of action is to try a gluten-free diet. Can anyone relate?
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tom Contributor
tom
Posted
He said because I've had no problem maintaining my weight, most likely it's not Celiac.

Another misinformed Dr :angry:

Jestgar Rising Star
Jestgar
Posted
I always wake up tired no matter well I've slept, I get headaches more often than normal, my legs feel very tired, and without sounding vain...I CANNOT STAND THE DARK CIRCLES under my eyes!!

You may also be anemic...

elye Community Regular
elye
Posted

You've got nothing to lose by trying the gluten-free diet - - fortunately, you don't need a doc's permission. If you think you may get tested, however, you need to be eating gluten or you could yield a false negative. In the end, however, the only truly accurate diagnostic tool is dietary response. False negatives happen with the blood panel and the biopsy.

Your symptoms certainly are indicative of a gluten problem. If I were you, I'd give the diet a try...and be sure that you are COMPLETELY gluten-free, as symptoms will stay with even tiny amounts of gluten. This site has fantastic articles and lists of offending foods and surprising sources of gluten that you should check out.

Welcome! You've come to the right place. :)

slmprofesseur Apprentice
slmprofesseur
Posted

Hi Monica,

I'm 31 and have had that pain since the birth of my second child. I went gluten/wheat free after my 10 month old baby was diagnosed with a wheat allergy. I feel great! I wasn't so tired/cranky. My asthma went away! My PCP implied that it was in my head. It's not, the first time I had the intense pain (by the way, morphine doesn't even touch it...) I ate raisin bran. It was definitely wheat, as I accidentally ate some roasted nuts with wheat and ended up in the ER again.

Good luck! In the end you're the best doctor for yourself!

MELINE Enthusiast
MELINE
Posted
My PCP implied that it was in my head.

I wish I could not hear this phrase again..........

Monica welcome. I completely agree with the answers the others gave you. Just go on and follow that gluten-free diet (unless there is a chance that you get tested, so then you will have to wait until the test is done). Have you checked the possibility of IBS?

MELINE Enthusiast
MELINE
Posted
He said because I've had no problem maintaining my weight, most likely it's not Celiac.

"What are the symptoms of Gluten intolerance and Celiac Disease? Many people suffer from headaches, mouth ulcers, weight gain or weight loss, poor immunity to disease, and skin problems like dermatitis and eczema.

But the common and well-known Gluten intolerance symptoms are gastro-intestinal (diarrhoea, flatulence, bloating etc.).

Also associated are miscarriage and infertility and malabsorption problems like anaemia. "

show that to your doctor......Don't be afraid to change doctor if you feel he is misinformed. Most of us had to pay many visits until we found the right one (If we were lucky to find him....)

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elye Community Regular
elye
Posted
Have you checked the possibility of IBS?

IBS is a symptom, nothing else. We like to say that it really stands for "I Be Stumped", as doctors throw it out when they're not sure about what's really going on. Syndromes are simply a collection of symptoms, the cause of which remains questionable or unknown.

I cannot believe the number of people who are told that they have IBS, been pushed onto some expensive drugs to "help with" the symptoms, continue to suffer with gastrointestinal problems, and then try the gluten-free diet on their own, only to find it completely alleviates their "irritable" bowel.....

Crazy, I tell ya!

monimoni Newbie
monimoni
Posted
  • Author

I would just like to thank everyone who responded to my post. All of your input is greatly appreciated. I feel more at ease just to discuss my problem with people that understand. You start to feel like a broken record or like you're just complaining all the time. I am not imagining this pain nor am I a hypchondriac. Thank you so much for your words. I am glad to be a part of this forum and will continue to post my hopeful progress.

p.s. does anyone live in the philly/south jersey area?

elye Community Regular
elye
Posted
p.s. does anyone live in the philly/south jersey area?

Oh, yeah....... :)

Patti? Judy?

gfp Enthusiast
gfp
Posted
IBS is a symptom, nothing else. We like to say that it really stands for "I Be Stumped", as doctors throw it out when they're not sure about what's really going on. Syndromes are simply a collection of symptoms, the cause of which remains questionable or unknown.

I cannot believe the number of people who are told that they have IBS, been pushed onto some expensive drugs to "help with" the symptoms, continue to suffer with gastrointestinal problems, and then try the gluten-free diet on their own, only to find it completely alleviates their "irritable" bowel.....

Crazy, I tell ya!

Couldn't agree more .... the 'diagnosis' of IBS probably leaves more people in misery and declining health than any other medical fad.

Can't explain it, don't know what causes it ... but here have a diagnosis and go away...

I'm sure the gluten-free diet helps many but equally there are probably lots of other causes wil never be found because the Dr's hand out pills to 'help alleviate' etc.

Meanwhile for the celaics ... still having problems on your gluten-free diet? Not eating bread but still have problems... must be IBS...

Lets forget about CC and hidden gluten...that would involve the Dr's having to think instead of reading drug co handouts... so the poor celiac gets told they are doing everything OK (when they are not) and given meds.

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      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?    
    • knitty kitty
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      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
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      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
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      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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