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What Were Your First Symptoms

Guest jhmom

By Guest jhmom
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Amanda Newbie
Amanda
Posted

I had an unexplained low hemoglobin for approximately 1-2 years. I went in for a colonoscopy and EGD with duodenal biopsy and was very surprised to learn I had celiac sprue. I did not experience a decrease in energy level as I have taught exercise classes and run long distances (2 marathons) for many years. I have lived with abdominal pain, diarrhea, bloating, constipation and gas for as long as I can remember, but I thought that was just the way everyone functioned. Now, in retrospect, it must have been the celiac disease causing the problems. I was diagnosed in June of 2003 and have not been successful in remaining gluten free for more than a week or so at most so I am continuing to live with the symptoms.

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Melanie Rookie
Melanie
Posted

Hey Racheleona,

After reading your post, I really wondered if you have Polycyctic Ovarian Syndrome. Your symptoms really sound like it. You can visit soulcysters.com and they have a great info section and message board.

Melanie

Racheleona Apprentice
Racheleona
Posted

hi melanie,

I asked my doc. about pcos, and he said "oh no, you don't have that", same with my obgyn. I do have every single symptom of it though!

Melanie Rookie
Melanie
Posted

Hey Racheleona!

That is what my Obgyn told me too. If you have any other symptoms of PCOS like excess hair, you might want to get your Obgyn to test you (hair loss can be from celiacs too especially if it is overall loss). Mine did finally test me and did find some blood work abnormalities, but I've since had many tests done and seen two endocrinologists and they agree I have some higher than normal bloodwork, but they don't think I have PCOS. I may have a sub-clinical case if I do have it.

Have you been tested for Celiacs yet? Are you on the diet? Is it helping? It seems to be helping me, but I cheat a lot still.

Rikki Tikki Explorer
Rikki Tikki
Posted

I can remember when I first noticed something was wrong. I got sick on my way to work probably about 18 years ago. I didn't go to the doctor because I thought it was the flu. I continued to get sick, went to the doctor and he told me I had irritable bowel. Then I was so embarrassed that I didn't go back for several years. I got very ill and lost twenty pounds in a four week period. I had been going to my gynecologist at the time and when I lost the first 10 pounds and told him I had lost ten pounds in a 2 week period he said a lot of his patients wish they had the same problem. When I returned to him two weeks after that I had lost an additional ten pounds and then he was concerned. He sent me to an internist who did some blood testing. The blood test showed something named "celiac" but he said it was so rare he was sure I didn't have it. He told me to eat soup, oatmeal and toast thinking that soft food would ease my stomach pain and symptoms. He also thought I should go to counseling because it was probably "stress-related." I did eventually get better and then two years ago I started getting sick again, lost additional weight and finally went back to the doctor. This time he sent me to a GI and after the blood test was off he did the biopsy and it showed celiac with the villi almost gone.

I suppose if I had it to do all over again I would of insisted the first doctor look further. By the time it was diagnosed my body was very weak and I ended up in the hospital for seven days.

What I have learned from all of this is that we must trust our own body's and when we know something is wrong then we must insist that an answer be found.

Any thoughts about this? :rolleyes:

Jinxy'sMom Newbie
Jinxy'sMom
Posted

Blood test for IgA and IgG drawn without my knowledge.

Rikki Tikki Explorer
Rikki Tikki
Posted

Hi Jynix's mom:

So did you have the blood drawn on yourself or your child? What were the results?

Sometimes they do a full panel screening which includes testing for this to see why a person is ill and then it shows celiac disease. Is that what happened? Was a biopsy done yet?

Hope all is well

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Jinxy'sMom Newbie
Jinxy'sMom
Posted

Hi Sally.

The blood draw is on me. They were just fishing around, supposedly because of my vit B deficiency, but I've had that for about 4 years and this was the first time anybody ck'd. I came up as weak/moderate positive, but neg on the TtG and EMA (I think?). Have a mild case of DH that dissapears right before dermatology appts. No biopsies on skin or intestines as of yet. I'm just not happy they ran this test without telling me what they were doing. They also told me not to worry about it unless I developed symptoms. Hah! :angry:

Oh well, I'm not giving up, but I am getting tired!

Heather

  • 3 years later...
B'sgirl Explorer
B'sgirl
Posted

Just thought I'd add my son's list of symptoms for others to reference. They may not all have been from Celiac but I kept track of everything in case the doc needed it:

Crimson Rookie
Crimson
Posted

Oh, wow. This is amusing in a way. I've been looking over my past and seeing the symptoms over my life. It's a bit overwhelming.

6 yrs of age I was a day dreamer in class. This is the same year my headaches started.

7-10 yrs. Severe headaches and leg pains. I didn't stand properly. I remember getting brain scans, full body x-rays and fitted for leg braces before they said it was "growing pains" and "stress".

The headaches continued.

17 I had a gallbadder attack and kidney, bladder infection so bad that I ended up in the hospital for days.

I had my parents sign me out because one kook dr thought I needed my galbladder out and the other kook dr said it was fine. I was in severe pain. But it eased up.

That same year I lost half my hair. "stress"

I've always had issues with my stomach. I thought it was normal for me.

When I was 18 I started getting severe yeast infections that I dealt with until I cut wheat out of my diet.

That was two years ago. I would still get a nasty infection if I ate too much rice bread or anything with yeast in it.

Three months ago. I cut out all forms of proccessed foods for a week.

When I went back to eating the way that I was...I got ill. Severe D, fatigue and malabsorption.

I had my secreter status tested throught Dr. D'Adamo's site and found that I'm non secreter.

That explains some of it. According to him, non secreters are 200% more likely to have celiac than others.

The non secreter diet, which kicked most gluten out...did not help.

That's when I started researching my issues. I found this site.

It's been LOADS of help!

I'm currently waiting for my enterolab results.

I've been full on gluten free for a bit over a month now. I'm taking liquid vitamins and following many suggestions from people on this site and I'm feeling MUCH MUCH better.

I'm sure you've no idea how much you help people that come here and just read and learn!

kevsmom Contributor
kevsmom
Posted

I was diagnosed after having diarrhea for about a month, and bruising and bleeding problems. My brother also has Celiac. When I asked him what his symptoms were he said he "Had NASTY gas". I replied, "Don't all guys have nasty gas?" :lol:

chasing4 Rookie
chasing4
Posted

DD woke up one morning and threw up 3 times and it went on for 3 more days. Bought her to the doctor and he said maybe the cough she had with croup was making that happen. We got the cough under control and she was still throwing up in the mornings.

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  • Recent Activity

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      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      High TTG-IgG and Normal TTG-IgA

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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