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Could It Be Celiac?

sillisent

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sillisent Newbie
sillisent
Posted

Hi- I'm new here, but I'm struggling to find what's wrong with me.

For the past year, I get extremely fatigued after eating (within 2 hours). It's gotten to the point that I can't keep my eyes open, I can't even sit up sometimes. It's worse after I eat things like pasta.

Recently, I was 'diagnosed' with IBS-C (chronic constipation). By 'diagnosed', I mean that the doctor did a blood test and said it came back normal, so I had IBS-C. While I agree that IBS-C describes what I have, it doesn't explain what goes with it.

I also had blood tests done that revealed low potassium, as well as a couple other vitamins (don't remember which ones).

At first they thought it was Diabetes because I had elevated blood sugar, but that went away and they confirmed it was a one-time high after 3 normal fasting blood sugars.

I have a lot of hair loss over the past month, which is the same time that I've been having worse and worse fatigue after eating. They did a thyroid test, which came back normal.

I'm getting so frustrated- I dread dinner every day, because it's the worst meal of the day for me. I used to just get by with a nap at night, but now I'm starting to dread lunch and breakfast, too. I am starting to experience generalized muscle weakness, and when I mentioned it to my dr a couple weeks ago he said it was probably unrelated and due to poor sleep quality or stress.

Then a few days ago, I stumbled across some info that said celiac and IBS-D and -C are often times co-occuring. While just a few studies doesn't mean I have it, there are some things that are lining up- but I don't know how or what to ask my doctor.

Any suggestions?

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Persei V. Enthusiast
Persei V.
Posted

You should ask your doctor about the possibility. Maybe schedule an endocospy and see what you'll get. Don't go gluten free before because you will have to be on gluten for the tests to work, and it will be worst if it's indeed some sort of gluten sensitivity...

Furthermore, if the tests come back negative and you still think it could be something to do with gluten, go gluten free regardless of the results. Then wait and see.

mushroom Proficient
mushroom
Posted

Welcome, sillisent!

Well, the first thing to ask your doctor for is a copy of the results of all the tests he ran on you. Find out what celiac tests he ran (if any), and if you would care to share, post your results here on the board. We would be happy to have a look at them.

I assume IBS-C means irritable bowel syndrome with constipation and as you seem to feel, it is not really a diagnosis at all. It just means that he has not found out why your bowels are irritable and constipated. If you are low in nutrients -- well, that is one of the side-effects of gluten intolerance, whether celiac or not. So is hair loss and fatigue. Some celiacs have constipation, some diarrhea, and some both alternating.

So let's see what he tested and what results came back and we can advise from there. Sometimes doctors run only the one celiac test, the tTG, when they need to run the full panel of five tests. You can test negative on some and positive on others.

Perspective Newbie
Perspective
Posted

Hi honey, I'm new here too, but also new to the celiac world. It's funny that you mention this problem you're having because I just watched a video today that seems to correlate with your problem. I'll post it here, and just hang in there. She's very articulate and describes what was happening to her really well. Here it is:

I have always had hypoglycemia, (low blood sugar). They tested me a loooong time ago and I almost passed out during testing. As I have recently discovered I have a problem with gluten I noticed certain things changing when I removed the gluten. One thing was that I no longer had the huge hunger cravings accompanied by the hypoglycemia episodes I would have. In fact, I had no shakes, no mood swings, no nothing. My conclusion: my blood sugar stablized.

Well, this girl talks about reactive hypoglycemia, which is where she would feel awful AFTER eating, especially after eating gluten.

Anyway, I see nothing wrong with cutting out gluten for 30 days to see how you feel, and the re-introduce it to see how you feel after. You will learn a lot. This is how I discovered I have a problem with it. However, you might want to get your blood sugar checked before hand, and obviously just discuss all this with your doctor to see if anything else is going on.

(I see you've had the blood sugar fasting... sorry about that... still makes me wonder!) Would still think about what this girl has to say and try a gluten-free challenge.

Good luck to you! :-)

MartyrMom2 Rookie
MartyrMom2
Posted

Hi- I'm new here, but I'm struggling to find what's wrong with me.

For the past year, I get extremely fatigued after eating (within 2 hours). It's gotten to the point that I can't keep my eyes open, I can't even sit up sometimes. It's worse after I eat things like pasta.

Recently, I was 'diagnosed' with IBS-C (chronic constipation). By 'diagnosed', I mean that the doctor did a blood test and said it came back normal, so I had IBS-C. While I agree that IBS-C describes what I have, it doesn't explain what goes with it.

I also had blood tests done that revealed low potassium, as well as a couple other vitamins (don't remember which ones).

At first they thought it was Diabetes because I had elevated blood sugar, but that went away and they confirmed it was a one-time high after 3 normal fasting blood sugars.

I have a lot of hair loss over the past month, which is the same time that I've been having worse and worse fatigue after eating. They did a thyroid test, which came back normal.

I'm getting so frustrated- I dread dinner every day, because it's the worst meal of the day for me. I used to just get by with a nap at night, but now I'm starting to dread lunch and breakfast, too. I am starting to experience generalized muscle weakness, and when I mentioned it to my dr a couple weeks ago he said it was probably unrelated and due to poor sleep quality or stress.

Then a few days ago, I stumbled across some info that said celiac and IBS-D and -C are often times co-occuring. While just a few studies doesn't mean I have it, there are some things that are lining up- but I don't know how or what to ask my doctor.

Any suggestions?

Welcome fellow newbie! I'm sorry you are feeling so terrible! I can totally relate to what you're going through though. I was also diagnosed with IBS following an endoscopy and colonoscopy in January '06. I thought IBS was a diagnosis of exclusion, meaning they rule everything else out first. Not so in my situation! No bloodwork, no biopsy, nothing but scopes. I tell you this because some physicians can miss things when trying to find out what is wrong with us. I agree with the other posters. You need to get copies of the labs that were drawn, both your thyroid and celiac. It's possible you didn't receive the comprehensive celiac panel. If so, you could have a false negative. Like you, I was diagnosed with hypokalemia, July 2007. Did you have episodes of diarrhea too? That could explain the hypokalemia and gluten could very well be the culprit. That was the case with me, the diarrhea. Also, the exhaustion and hair loss you describe, you could very well be speaking on my behalf. In October '08, I went to see my physician due to a growing fatigue and hair loss. I thought for sure I had anemia or cancer, something. It was that bad! Anyway, the physician agreed to test me and after examing me, she suggested testing my thyroid as well. My iron levels were w/in range, but my TSH was 14.6. I have been on Synthroid every since. Like the celiac panel, a comprehensive thyroid panel needs to be ran too. Did they check your thyroid antibodies? You could very well have a TSH within normal range, but be producing thyroid antibodies and that could be causing your symptoms. I still have yet to get my antibodies tested. I didn't mean to make this post about me. I just want you to know that you are not alone. You can't be dismissed without being properly and thoroughly tested. I hope you are able to find out what is going on soon so you can start to feel better!

sillisent Newbie
sillisent
Posted
  • Author

Well so far he's only run a comprehensive metabolic panel and the fast blood glucose. I'm waiting to get a copy of the results, but I'm pretty sure that he hasn't even tested for celiac yet. It took me a long time for him to do tests, and when my blood glucose ones came back normal, I think it convinced him it's just me being too sensitive or picky. I'm going back in a couple weeks so I'll ask him about celiac, I just don't know if he'll even believe me.

However, at a previous appointment he was considering sending me to a gastroenterologist- would they know more about celiac?? I can only hope I'd have more luck with them.

At this point, even my boyfriend and family are getting annoyed with my constant tiredness. When they thought it might be diabetes, I was almost relieved- at least THEN I'd have a diagnosis and would know it's not all in my head.

Also, I've thankfully not often experienced the D side of IBS.

Also, are the tests they do for celiac all blood tests (except the endoscopy, of course) ? My doc doesn't mind sending me for blood tests- as evidenced by the repetition of glucose tests.

mushroom Proficient
mushroom
Posted

Well, that is pretty standard - celiac is usually the last thing they think to test for. Yes, the tests are all blood tests and consist of the following:

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

You should make sure he runs the whole panel, because you can test positive on one or more and negative on others. :unsure: Not all gastroenterologists are celiac savvy, but if your doctor feels out of his depth with celiac it would not be a bad idea to take the referral; you might luck out. You could ask your local celiac society for a recommendation on a good GI, and then ask your doctor to refer you to him.

And don't let anyone tell you it's all in your head - it's in your body, gosh darn it!!!

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MartyrMom2 Rookie
MartyrMom2
Posted

Well so far he's only run a comprehensive metabolic panel and the fast blood glucose. I'm waiting to get a copy of the results, but I'm pretty sure that he hasn't even tested for celiac yet. It took me a long time for him to do tests, and when my blood glucose ones came back normal, I think it convinced him it's just me being too sensitive or picky. I'm going back in a couple weeks so I'll ask him about celiac, I just don't know if he'll even believe me.

However, at a previous appointment he was considering sending me to a gastroenterologist- would they know more about celiac?? I can only hope I'd have more luck with them.

At this point, even my boyfriend and family are getting annoyed with my constant tiredness. When they thought it might be diabetes, I was almost relieved- at least THEN I'd have a diagnosis and would know it's not all in my head.

Also, I've thankfully not often experienced the D side of IBS.

Also, are the tests they do for celiac all blood tests (except the endoscopy, of course) ? My doc doesn't mind sending me for blood tests- as evidenced by the repetition of glucose tests.

You had mentioned in your first post that your physician diagnosed you with IBS based on a blood test, so I had assumed it was a Celiac test. I'm sorry for the confusion. Wonder what test it was? Apparently not all gastroenterologists are aware of Celiac Disease. Mine certainly wasn't. He never even mentioned the possibility of Celiac Disease. No blood work or biopsy. I was diagnosed on the basis of a clear endoscopy and colonoscopy, but he didn't take any tissue samples during my upper scope, so how can I know for sure? I guess that's why a lot of people are initially misdiagnosed with IBS. I personally believe IBS is a symptom, not an acceptable diagnosis. As a general rule, gastroenterologists specialize in diseases of the digestive tract. Maybe you'll get a good one! If your TSH was w/in normal range, please consider getting a thyroid antibody test too. That is, if that hasn't been done already. It can show you if you are producing antibodies against your thyroid, which could be causing your exhaustion and hair loss. Of course, celiac w/ its associated vitamin deficiences can probably cause these symptoms. I've heard others on here refer to IBS as I Be Stumped, which I absolutely love! I like to refer to it as Idiotic Bull S***! :lol:

GottaSki Mentor
GottaSki
Posted

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

Welcome!

You should definitely get tested.

In addition to the Full Celiac Blood Panel, you can ask your primary to order vitamin/mineral blood tests. Low nutrients are another strong indication of Celiac Disease. Celiac damages the small intestine which prevents proper breakdown and absorption of nutrients. These were run for me at diagnosis and check ups: Bs, D, K, Iron, Ferritin, Copper and Zinc.

Once all the testing is done - even if the tests are negative you should remove ALL gluten for three months (six is better), because elimination of gluten is the only test available for Non-Celiac Gluten Intolerance which can have many of the same symptoms of Celiac Disease.

Good Luck :)

sillisent Newbie
sillisent
Posted
  • Author

Thanks for all the information.

The reason he said it was IBS based on blood work was because he thought diabetes was causing constipation, and once he ruled that out, I guess the only logical conclusion is IBS?

:rolleyes:

I'll be sure to ask for all the celiac tests!! I'd hate it if he only did one and it was negative and he brushed it off. And I had a thyroid test a couple of years ago which was normal, but I'll ask about that, too, since health is always changing.

I'll be sure to update once I get all the tests done. Thanks everyone so much for the help!!!

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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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